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World Edition 2013

Brain Tumour You are not alone on this journey...

A better future

for children with high grade glioma:

WHAT ROLE DO ALLERGIES PLAY?

n

ARTICLES ON ADULT AND PEDIATRIC BRAIN TUMOURS n

The journey of the HIT-GBM group BRAIN METASTASES RECEIVE RESEARCH ATTENTION n

PLUS: n

Stories from around the world, including ROMANIA, UGANDA, USA, NIGERIA, UK, TAIPEI, THE NETHERLANDS and AUSTRALIA

Interviews with neuro-specialists, patients and caregivers n

Is there a place for anti-psychotic drugs in brain tumour treatments? n

Comprehensive worldwide list of brain tumour-specific support groups n

Right: Dr Johannes E. Wolff of the Tufts Medical Center, Boston (USA), with a young patient

Produced by the International Brain Tumour Alliance

GREATER KNOWLEDGE n GREATER COLLABORATION n GREATER HOPE

Brain Tumour

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!

k l a e W h T d n u o Ar

d l r o W n i a r B For mours Tu

a project of the

Walk Around the World for Brain Tumours! Organise a sponsored walk to raise awareness of and funds for more research and support. Walks can be done anytime between

1 January & 31 December 2013 The IBTA doesn’t want any of your funds raised. These should go to local brain tumour support groups or relevant research institutions. We would like you to symbolically “donate” to the IBTA only the mileage achieved by you on your walk. Walks can also take place during the International Brain Tumour Awareness Week (27 October to 2 November) when groups and individuals around the world will organise scientific meetings, patient conferences, TV interviews, press releases, etc in order to raise awareness about brain tumours. For your organisation or group to be a “supporter” of the “Walk” and “Week” please contact the IBTA Chair or Co-Director as below. The IBTA requires no financial commitment or fee to be paid to us by you. All we are asking for is your enthusiasm in supporting and promoting these events and for allowing us to add your name to our list of supporters.

For more information please visit www.theibta.org or contact chair@theibta.org or kathy@theibta.org


Featured Contents WORLD EDITION 2013

n Meet

the IBTA Team. . . . . . . . . . . . . . . . . 8

n EORTC

Brain Metastases Platform

n Combining

By Sandrine Marreaud, Matthias Preusser and Wolfgang Wick. . . 28

by Michael Vogelbaum. . . . . . . . . . . . . . . 10

nI

n European

by Elizabeth Pool. . . . . . . . . . . . . . . . . . . . 32

neurosurgery with neurooncology research

Association of NeuroOncology: goals and challenges

n The

remember the light and hope my mother filled our home with

journey of the HIT-GBM Group

of antipsychotics and statins in the treatment of glioblastoma by Baghya Nirmani Wijenayake and Louise Lutze-Mann. . . . . . . . . . . . . . 34

n Allergies

and glioma. . . . . . . . . . . . . . . 64

new CEO Robin Boettcher. . . . 66

Tumour Ireland. . . . . . . . . . . . . . . 16

lightning strike twice?

by Denis Goldenberg . . . . . . . . . . . . . . . . 76

n Caring

by Michael Weller. . . . . . . . . . . . . . . . . . . 36

n In

for patients as unique individuals

n Imagine

art therapy and cancer by Jody Thomson . . . . . . . . . . . . . . . . . . . 38

the end it´s not the years in your life that count, it´s the life in your years by Petra Hoogendoorn. . . . . . . . . . . . . . . . 84

n Brain

n Standard

you know what I most want?

by Razvan Ionut Stupinean . . . . . . . . . . . 18

n Can

a world where children don’t get cancer by Patricia Blanc . . . . . . . . . . . . . . . . . . . . 80

by Johannes E Wolff . . . . . . . . . . . . . . . . . 14

n Stolen

IBTA at ISPNO Toronto. . . . . . . . . 56

n PBTF’s

n The

n Do

of tragedy...

by Andy Foote. . . . . . . . . . . . . . . . . . . . . . 54

n Potential

by Ricardo Soffietti. . . . . . . . . . . . . . . . . . . 12

n Brain

n Out

n Clinical

from my world

by Mihaela-Cristina Moldovan. . . . . . . . . 19

tumours in Denmark. . . . . . . . . 4O

therapy and side effects

by Jean Arzbaecher. . . . . . . . . . . . . . . . . . 86 nA

role for blood tests in brain tumours?

n Challenges

in developing countries . . . . . . . . . . . . . . 42

By Aysegül Ilhan-Mutlu & Matthias Preusser . . . . . . . . . . . . . . . . . 22

n Creating

nA

British neuro-oncologist in Africa

n Dear

by Kirsten Hopkins . . . . . . . . . . . . . . . . . . 24

n Brain

a strand of memories. . . . . . 44

n English

National Brain Tumour Registry and Portal by Jem Rashbass. . . . . . . . . . . . . . . . . 94

Doctor. . . . . . . . . . . . . . . . . . . . . . . 46

n Brain

tumour treatment in Nigeria

by Patrick C Gedeon and John H Sampson. . . . . . . . . . . . . . . . . . . 104

tumor vaccines

by James A Balogun. . . . . . . . . . . . . . . . . 48 n Expanding

the horizons of brain tumor rehabilitation

n Brain n An

By Mahlon K Stewart and Ilana Unger. . . 26

by Kimberly M Wallgren. . . . . . . . . . . . . . 50

extraordinary story

tumour organisations offering support and information. . . . . . . . . . . 108

. . . and many more articles of interest to the international brain tumour community Cover photo: Dr Johannes Wolff of Tufts Medical Center, Boston, USA, with a young patient. Photo courtesy of Len Rubenstein for Tufts Medical Center, Boston, Massachusetts, USA Magazine design by Edwina Kelly, email: edwina@edwinakellydesign.co.uk Brain Tumour

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Colin David Edward Oliver The 2013 edition of Brain Tumour magazine has been made possible in part by the generous support of Colin David Edward Oliver’s family, friends and business colleagues who donated funds to the International Brain Tumour Alliance (IBTA) in his memory. Colin was diagnosed with a brain tumour in 2004, age 24, and passed away, age 32, in August 2011 after a seven-and-a-half year journey. Colin’s incredible determination, courage and zest for life were a crucial part of the inspiration behind the establishment of the IBTA in 2005. We warmly extend our grateful thanks to all those who paid tribute to Colin by donating funds in his memory. In doing so, they will help to make this edition of Brain Tumour magazine available to people in the international brain tumour community - including patients, caregivers, medical professionals, researchers, allied healthcare workers, key opinion leaders and others - in 109 countries around the world.

We also wish to thank our industry sponsors for their generous grants in support of the 2013 magazine as well as their support of the “International Brain Tumour Awareness Week” and the “Walk Around the World for Brain Tumours”. “The Walk” and “The Week” initiatives are now in their seventh year.

For further details of the IBTA’s sponsorship policy see www.theibta.org The IBTA welcomes grants in support of its work. Please contact chair@theibta.org or kathy@theibta.org 4

Brain Tumour


LETTER FROM THE EDITORS

Published by The International Brain Tumour Alliance (IBTA) Editorial Kathy Oliver, Denis Strangman (Editors) Chris Tse, Sally Payne, Jeanne Pasmantier, Georgie Parker (Editorial Assistants) Magazine Design Edwina Kelly Design (edwina@edwinakellydesign.co.uk) Cover photograph Photo courtesy of Len Rubenstein for Tufts Medical Center, Boston, Massachusetts, USA Copy With warm thanks to all our contributors, interviewees and colleagues in the international brain tumour community Printing Wyndeham Heron, Maldon, Essex, UK Distribution Worldwide Mailing Solutions Ltd, Lancing, West Sussex, UK Brain Tumour is published by the International Brain Tumour Alliance (IBTA), a not-for-profit, limited liability company incorporated in England and Wales, company registration number 6031485. International Brain Tumour Alliance (IBTA) 10 Carrodus Street, Fraser, ACT 2615 Australia PO Box 244, Tadworth, Surrey, KT20 5WQ, United Kingdom © 2013 International Brain Tumour Alliance (IBTA) DISCLAIMER The International Brain Tumour Alliance (IBTA) has made every effort to be accurate regarding the information contained in this magazine. The IBTA accepts no liability for any inaccuracies or omissions herein nor can it accept liability for any loss or damage resulting from any inaccuracy in this information or third party information. The information contained in this magazine is for educational purposes only. The material in this magazine is in no way intended to replace professional medical care, advice, diagnosis or treatment from a doctor, specialist or healthcare professional. For medical help and advice please consult your doctor. Company sponsorship of the IBTA mentioned in this magazine does not necessarily imply the IBTA’s endorsement of any particular form or forms of therapy, devices, medical regimens, plans or behaviour referred to, promoted, manufactured or distributed by those companies. The views expressed in this magazine are not necessarily those of the International Brain Tumour Alliance. It is not the intention to print any matter that discriminates on the grounds of race, sex, sexuality, belief or disability. The IBTA takes no responsibility for the content of third party websites mentioned in this magazine. With regard to any advertisements in this magazine (the spaces for all of which have been offered by the IBTA to companies and organisations gratis), the IBTA has included these advertisements in the magazine in good faith and on the basis that they have been cleared for acceptable content in a consumer magazine through the relevant company’s and organisation’s appropriate legal channels. The IBTA accepts no liability for or responsibility for the information/content appearing in such advertisements in this magazine. The IBTA welomes the ABPI (Association of British Pharmaceutical Industry) Code of Practice (effective in the UK), the CHF/ MA (Consumer Health Forum/Medicines Australia) Working Together Guide and Manual (effective in Australia), the EFPIA (European Federation of Pharmaceutical Industries and Associations) Code of Practice on Relationships Between the Pharmaceutical Industry and Patients’ Organisations and the Healthcare Industry, and other relevant national and international indusrty-patient guidelines, and endeavours to work within their recommendations. Items in the magazine (except those with original copyright) may be reproduced for the benefit of patients and caregivers as long as appropriate credit is given to the IBTA. Please contact us for information on reproducing articles in this publication. For further information on the IBTA’s sponsorship and transparency policy, please see www.theibta.org VARIATIONS IN SPELLING Spelling in this publication varies according to countryspecific practices and is thus variable throughout the magazine. For example, the word ‘tumor’ is spelled as “tumor’ in the United States but “tumour” in the United Kingdom and Australia. Sometimes the term “neuro oncology” is expressed without a hyphen and at other times with a hyphen as in “neuro-oncology”. To preserve the international nature of this publication, the IBTA has varied the spelling accordingly.

Dear Reader, WELCOME to the fourth annual edition of Brain Tumour magazine. We continue to receive good feedback about the contents of each magazine and believe that it is appreciated by the many thousands of people in the 109 countries where we have contacts. Since 2008, when we printed our first IBTA booklet on the “Walk Around the World for Brain Tumours”, we have probably distributed around the world a collective total of about 60,000 copies of free awareness-raising publications including, Brain Tumour magazine. All year around - particularly when we attend conferences and when we scan daily news items and reports of newly-completed research - we are on the lookout for possible topics and authors who can contribute to Brain Tumour magazine. The magazine takes up several months of continuous work and its printing and distribution around the world absorbs a sizeable proportion of our annual income. We pride ourselves that, prior to the IBTA’s existence, there was nothing quite like Brain Tumour magazine serving the international brain tumour community. There were publications directed to audiences in individual countries, and journals that were exclusively devoted to reporting research findings. But there was no single publication that tried to appeal to the collective worldwide brain tumour community of patients, caregivers, researchers, scientists, clinicians, neurosurgeons, journalists, industry representatives and allied healthcare workers. By the way, many of you will be familiar with the IBTA’s free monthly E News bulletin which is now distributed electronically to 6,000 very relevant contacts around the globe. If you don’t already receive a copy of the E News you can subscribe via the on-line facility on our website (www.theibta.org) Many charities and not-for-profits have been hit by the current economic climate and the uncertainty it has generated, including the IBTA. Right from our foundation we made a conscious decision not to actively seek funds from the general public in various countries but, instead, we encouraged people to donate to their regional or national brain tumour support or research organisations. We have continued to follow that policy and have sought funding from sources other than the general public. To that end, we welcome suggestions from our readers as to any possible new sources of funding because it is always helpful if someone is known to a potential source and can put in a good word about us. As a completely voluntary entity, we are a very lean organisation administratively, with no paid staff or significant overheads. We have great plans for new projects, all with the intention of creating greater linkages within the brain tumour community and much more awareness in the broader public arena. We always welcome feedback and comment from our readers, so do feel free to get in touch by contacting either of us at chair@theibta.org or kathy@theibta.org We hope you enjoy this issue of Brain Tumour magazine and that it helps to provide insight, inspiration and information to our readers, as well as engendering solidarity, awareness and hope within the international brain tumour community.

Denis Strangman & Kathy Oliver P.S. The articles in this magazine are not inserted in any particular order of

importance. We think they all make excellent reading and if you should start to thumb through this publication from the back, rather than from the front, you will find articles which are as important as those at the beginning. Items in the magazine (except those with original copyright) may be reproduced for the benefit of patients and caregivers as long as appropriate credit is given to the International Brain Tumour Alliance (IBTA). For extra single and bulk copies of the magazine and enquiries about postage and freight costs, please contact: chair@theibta.org or kathy@theibta.org

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Did you receive this magazine in a personally addressed wrapper? If you did, then you are on our database. However, if you received the magazine but do not receive our regular E News bulletins it means that we do not have your email address. If you would like to receive the monthly E News bulletins please send your name and email address to: chair@theibta.org

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What is the International Brain Tumour Alliance?

Above: The inaugural meeting of the International Brain Tumour Alliance was held on 7th May 2005 in Edinburgh, Scotland at the World Federation of Neuro Oncology conference. Pictured above are some of the 50 people - brain tumour patients, caregivers, scientists, nurses, health professionals, researchers and former caregivers - who attended that first meeting.

THE International Brain Tumour Alliance (IBTA - a not-for profit organisation registered in England and Wales) - has existed since May 2005. It was established at the World Federation of Neuro Oncology meeting in Edinburgh, Scotland and is a worldwide cooperative initiative involving brain tumour patient support, advocacy and information organisations as well as including researchers, scientists, clinicians and allied health professionals who work in the area of brain tumours. The IBTA advocates for equitable patient access to brain tumour therapies; encourages the establishment of brain tumour support groups in countries where they don’t yet exist; and raises awareness of the challenges of this devastating disease. The IBTA’s two major annual initiatives “The International Brain Tumour Awareness Week” and “The Walk Around the World for Brain Tumours” - have been supported by up to 197 brain tumour and cancer-relevant organisations around the globe. The IBTA produces a monthly electronic news bulletin which is distributed to 6,000 contacts internationally. It also publishes a major annual magazine called Brain Tumour. In 2013, 12,000 copies of the magazine

were printed and made available for free to contacts in 109 countries. The IBTA also attends and exhibits at significant scientific conferences around the globe, including the American Society of Clinical Oncology (ASCO), the European Association of NeuroOncology (EANO), the Society for Neuro-Oncology (SNO), International Symposium on Pediatric Neuro Oncology (ISPNO) and the European Cancer Congress, as well as conferences organised by national professional societies at which the IBTA usually has a display and distributes its magazine to participants. The IBTA Co-Directors, Denis Strangman (Australia) and Kathy Oliver (United Kingdom) are frequent plenary session speakers at major conferences, providing the patient and caregiver perspective on a wide range of issues of current concern, including clinical trial design and related explanatory materials, health technology and regulatory issues, and the place of brain tumours within the general cancer community, particularly as a rare or less common cancer. The IBTA also provides the brain tumour patient and caregiver perspective in submissions to regulatory agencies on a wide variety of issues. Additionally, the IBTA regularly engages in a range of brain tumour-related and rare/

less common cancer-related initiatives on a political level in various geographic regions. The IBTA is a completely voluntary organisation and the value of its work has been recognised by awards, and appointments to advisory boards and international brain tumour and cancer initiatives. n

INTERNATIONAL BRAIN TUMOUR ALLIANCE THE IBTA logo was the winning design in an international competition to find a suitable symbol for the International Brain Tumour Alliance. The logo symbolises a patient and caregiver-centred approach, strength in purpose, hope, and unity around the globe in the fight against brain tumours. n

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Meet the IBTA team THE International Brain Tumour Alliance (IBTA) occupies a significant position in the international brain tumour community, linking patients, caregivers, family members, clinicians, specialists, scientists, researchers, allied healthcare professionals and industry representatives. To carry on its work, the IBTA relies heavily on the generous support of many people around the world. The IBTA is a completely voluntary organisation. We have no paid staff or paid directors. We only commission outside services, such as graphic design and distribution logistics for our publications when we have insufficient expertise from within our own ranks to undertake such work. We rely on grants from industry and private foundations and do not seek to compete with existing local or national brain tumour support, information and advocacy groups for funds from the general community. We are, therefore, very grateful to our sponsoring organisations whose contributions enable us to publish and distribute free copies of this magazine to thousands of people around the world in 109 countries. We are also very appreciative of the medical specialists and researchers who answer our technical questions and let us know what is happening in the brain tumour scientific world. The organisers of various brain tumour and cancer-relevant conferences throughout the year kindly allow the IBTA to exhibit at their events and meet their delegates - for this we are also very grateful. But there are a number of people who are crucial to the day-to-day activities of the IBTA and we’d like to introduce you to them and take this opportunity to publicly acknowledge and thank them for the tremendous work they do for us. n 8

Brain Tumour

IBTA Chair and Co-Director Denis Strangman from

IBTA Co-Director Kathy Oliver became involved in brain

Canberra, Australia lost his wife Margaret to a

tumour advocacy when her son Colin was diagnosed

glioblastoma brain tumour some years ago and

at age 24 in 2004 with a brain tumour. Tragically,

has been a patient advocate in the brain tumour,

Colin passed away from his brain tumour in August

cancer, and palliative care areas for the past decade.

2011, age 32. Kathy cites Colin’s “incredible courage,

He was the foundation Chair of a national brain

determination and fortitude” as the driving force and

tumour advocacy group and served for four years as

inspiration behind her involvement in the international

secretary of Brain Tumour Alliance Australia.

brain tumour community.

IBTA advisor Chris Tse in his Taipei office. Chris

IBTA advisor Sally Payne, is a university lecturer

also works from his home city of Wellington,

in Sydney, Australia. Sadly, Sally lost her sister,

New Zealand. Chris’s wife, Lynda, is a long term

Arianne, to a brain tumour in September 2011.

glioblastoma survivor. Chris and Lynda have two

Arianne was only 43 years old. Sally has

children, Cassandra and Nathan. Chris has been a

been giving invaluable assistance to the IBTA

valued member of the IBTA team since 2006.

since 2006.

Graphic designer Edwina Kelly masterminded the

Jeanne Pasmantier, who lives in the USA,

artwork and layout for this year’s IBTA magazine. Her

provides editorial and research assistance to

business, Edwina Kelly Design, specialises in a wide

the IBTA. A journalist and author in her own

range of design including; entertainment and events

right, Jeanne also sometimes helps the IBTA with

promotions, book jacket, magazine and logo design.

Spanish translation work.

We’re tremendously fortunate to have such an experienced and talented professional helping us.


IBTA helper Carol Knight lives in the UK and

Fraser Legge, who also lives in the UK, helps the

Jean Arzbaecher (USA) is a Clinical Nurse Specialist

provides administration support for IBTA

IBTA with its accounting requirements. Because

from the University of Chicago Brain Tumor Center.

projects. Carol also served as one of the stage

the IBTA is registered as a not-for-profit in the UK

Jean helped the IBTA staff its booth at the 2012

managers for two UK concert tours undertaken

we are obliged to lodge returns with the relevant

American Society of Clinical Oncology (ASCO)

by American singer/songwriter/brain tumour

authorities there. We’re very grateful for the time

scientific meeting in 2012. This year, Jean has

survivor David M Bailey when the IBTA organised

and effort Fraser donates to the IBTA.

kindly written an article for the IBTA magazine entitled: “Brain tumor standard therapy and side

these two events in 2007 and 2008.

effects: what the patient should know”.

Mary Ellen Maher, also from Chicago, is an Advance

Georgie Parker from the UK provides administration

Tara Gent (Australia) looks after the mileage

Practice Nurse at the Northwestern University

support for IBTA projects. Georgie’s nephew

results from the individual events that go

Feinberg School of Medicine Department of

Ronnie sadly passed away from a brain tumour in

towards the annual ‘Walk around the World

Neurological Surgery, and also helped the IBTA staff

2012. Georgie also campaigns for greater public

for Brain Tumours’. Tara lost her brother to a

its booth at the 2012 ASCO scientific meeting.

awareness of brain tumours.

brain tumour.

Not pictured: Jan Payne from Sydney, Australia and Marj Eder from Burrill Lake, Australia help the IBTA with managing its database.

For a not-for-profit organisation, the IBTA has an unusual attitude towards donations. We don’t wish to receive any funds from organisations who support the “Walk Around the World for Brain Tumours” and the “International Brain Tumour Awareness Week” because it is crucial that these are directed to local, national and regional brain tumour support or research organisations in your own country. However, as a completely voluntary organisation with no paid staff we do need some funding for our work and our publications. So we welcome offers of funding from companies and philanthropic organisations and have a detailed sponsorship policy on our website that covers that subject. Enquiries should be directed to: chair@theibta.org If they wish to, individuals can also make donations directly to us via the on-line facility on our website www.theibta.org but please do not neglect your local or national brain tumour support groups.

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The best of both worlds: combining neurosurgery with neurooncology research By Michael Vogelbaum, Professor of Surgery (Neurosurgery), Associate Director of Neurosurgical Oncology, Cleveland Clinic, Cleveland, Ohio, USA Vice President of the Society for Neuro-Oncology (SNO).

I

grew up in Short Hills, New Jersey (USA) which is a suburb of New York City. NYC was only a 30-minute car ride away and we went into the city often for sporting events, theater, and museums. To this day I continue to enjoy exploring large cities. My grandparents, parents, and their siblings were all in the business world. Nearly all of my cousins, like me, went into medicine or science. My father originally wanted me to go into law as he thought that was going to be the best training for either the financial or corporate worlds. I had little interest in law, however, and zeroed in on math and science early in my education. Fortunately for me, my father was understanding, and he fully supported my interests.

Making choices...and then pursuing a career in neurosurgery and neurooncology research When I was applying to college, I thought about what I might study and could not decide between the various areas of science or math. In that process, I discovered the field of biomedical engineering (which includes all of the physical sciences, and math) and realized that was for me. When it came time to decide on whether to go to medical school or graduate school, I could not choose one over the other and instead I did both and enrolled in an MD-PhD program. My initial interest was in studying cardiac physiology and I was contemplating working on developing ventricular assist devices or artificial hearts. However, in medical school I “discovered� the field of neuroscience and redirected my research training to 10

Brain Tumour

Above: Michael Vogelbaum and his son Evan at a Cleveland Browns football game in Cleveland, Ohio, USA, last autumn

that field. My dissertation focused on work that I did with mammalian neural transplants in the field of circadian biology, which is the study of biological clocks located in the brain that govern many aspects of physiology and behaviour. So my neurosurgical career started with craniotomies on mice and hamsters. I had decided earlier to pursue a clinical career in a surgical discipline, and so I chose to do a residency in neurosurgery. As for brain tumors, that was an unexpected change from what I initially was doing during the research years of my residency. Initially I did work in the area of the developmental biology of neuronal apoptosis, that is the programmed cell death that is essential for normal development of the nervous system and which can be inappropriately activated in adult neurodegenerative diseases. I started to think about how I could

meld my research interests with my clinical practice and realized that I enjoyed cranial surgery, in particular brain tumor surgery, more than other areas of neurosurgery. So I changed my research focus to study the biology of apoptosis in brain tumors, completed my residency training and pursued a job hunt for a position that would allow me to focus on brain tumor surgery and start a neurooncology research laboratory. And here I am, still, at the Cleveland Clinic.

From bench to bedside When I started medical school, I never imagined that I would have a career in oncology. Cancer was the last thing that I wanted to think of; like many people I was afraid of it. I realized that I would not want to have a malignant brain tumor focused practice without the hope that comes from having a research program. After spending the day telling patients


about the prognosis and challenges that they face, I had my research laboratory to go to, and that served as a form of therapy for me. Later on, I realized that discovery research alone would not be enough for me; I focused on the translational aspects of research and specifically research that went from bench to bedside (more so than the opposite direction). I wanted to engage in research that had a greater chance of producing a direct impact on my patients. I did not initially plan to engage in translational or clinical research; these types of research have become some of the most valued surprises of my career and help balance the challenges that I face when breaking bad news to patients. One cannot work in the field of brain tumors without the hope that a significant breakthrough is just around the corner (or maybe just down the block).

The challenges of brain tumor drug delivery One area that I have focused on over the past ten years is that of drug delivery. Several projects in my laboratory (and much work by other investigators) have demonstrated that most of the “targeted” drugs that we have investigated do not actually reach their targets in brain tumors at biologically meaningful concentrations,

due to the presence of a partially functional blood-brain (or tumor) barrier. And yet we continue to run clinical trials with drugs that may or may not have a biological effect on tumors when given via the conventional routes of administration (IV or oral). We simply do not spend enough time studying this issue in our clinical trials. Other agents, most notably viral mediated gene therapies, can only be administered directly into tumors. So I have spent quite a bit of my time over the past five years focused on improving our ability to deliver therapeutics directly into the brain. My clinical interest in this area started with a few trials that I was involved in that used convection-enhanced delivery (CED) via temporarily implanted catheters. My colleagues and I quickly recognized the technical limitations associated with this approach when we were forced to use “off-the-shelf” catheters, which were not optimal for this delivery method. Furthermore, we had no way to determine where the therapeutics we infused actually went, and whether they reached the intended target tissues within the brain. I am currently working on developing CED-optimized delivery devices (and a few other catheters are also under development by other groups), and we are planning to open our first human trial with

a new device possibly later this year. I am hopeful that we can demonstrate that there is a new, more reliable route into the brain for the delivery of therapeutics. If we are successful, then perhaps many of those drugs that were thought to have promise for treating brain tumors may be worth investigating again! That would be extremely exciting for brain tumor patients.

Maintaining a balance in life Especially as I have been traversing middle age, I have found that recreational physical activity is essential for me to maintain balance in life. I enjoy running, and my latest hobby is tennis. One of the best parts of tennis is that it has allowed me to develop friendships with guys who are not in medicine or science, and my time with them opens a window for me to the “real” world. As highly dedicated and focused clinicians and scientists, we often can lose sight of the fact that much of the world does not understand what we do, and may not value it the same way we do (we need to do a better job of educating the public about our efforts to make the treatment of patients with brain tumors more successful). But if I had a better backhand, then my friends would be impressed! n

Brains Together for a Cure Brains Together For a Cure holds two walks in the United States each year. One is in Spencer, Iowa and the bigger one is in Rochester, Minnesota. In 2012 over 700 people attended the walks and to date the organization has donated more than $350,000 to Mayo Clinic for brain tumor research. The purpose of our group is to promote awareness of brain tumors and their need for improved treatments. Through raising money for projects at Mayo Clinic we hope to help improve treatments and increase survival for all brain tumor patients. n

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The European Association of NeuroOncology: Goals and Challenges By Professor Riccardo Soffietti Department of Neurology, University of Torino and San Giovanni Battista Hospital, Torino, Italy, and President of the European Association of NeuroOncology (EANO)

I

spent my childhood in Torino (Turin, Italy), but for many years during the summer holidays I lived in the nearby countryside with my grandparents. No one from my family had a connection with medicine or research. In fact my father was involved in the Fiat car industry and my mother was a schoolteacher of young children. One summer, during the holidays at the end of high school, I read a revealing book on human genetics which belonged to my mother and which I found fascinating. Afterwards, during my early years at the University of Torino Medical School I was attracted both by the functioning of the brain and the biology of tumors. Thus I moved for my MD thesis to the Neuropathology Department, which was, at that time, quite active in brain tumors.

Involvement in all things neuro oncological Today, I have a particular interest in new treatment modalities in primary brain tumors, brain metastases and neoplastic meningitis as well as translational research and advanced neuroimaging. I am also interested in guideline development for brain tumor treatment and I am a member of CERN, the Collaborative Ependymoma Research Network which works across geographical lines in order to advance a cure for ependymoma. I am involved in the CERN Tumor Profiling and Pathology Project. As doctors who treat people with brain tumors, we must remember that each patient has their own emotional and psychological aspects and to fit best with them is a continuous challenge. Trust between the patient and the doctor is 12

Brain Tumour

Above: A proud father - Dr Riccardo Soffietti at his 25-year-old son Federico’s graduation from the University Bocconi in Milan, Italy. Federico took a degree in economy and finance

crucial so ultimately, when a patient tells me “I trust you,” I am satisfied.

EANO’s goals for the future As the current President of the European Association of NeuroOncology (EANO) I believe that we have the great opportunity to look to EANO’s future as that of being an important umbrella organization for both individual members and national groups of neuro-oncology specialists in Europe. We have multiple tasks ahead, however. It will be important to spread information on practice, organization, educational and scientific activities regarding neuro-oncology within Europe; develop a post-residency curriculum for both neurosurgical and medical neuro-oncology (as already established in the United States); define criteria for the recognition of Centers of Excellence

or Expertise (especially for rare brain tumors) within Europe; and build a World Federation of Neuro-Oncology together with our American and Asian colleagues It is also imperative to guarantee for our patients affordable and equal access within Europe to newly developed technologies and drugs (in particular targeted compounds). We also need to emphasize and strengthen the concept that quality of life maintenance and improvement is as important as prolonging survival not only in clinical trial design but in daily practice as well.

The importance of brain tumor patient organizations, guidelines and education In my view, brain tumor patient organizations should always be present in the committees of scientific societies and registration authorities as well as


company boards in order to present and defend patients’ opinion and rights. As EANO, we will promote these goals at a European and national level. Another future task of EANO is to foster education in neuro-oncology and to promote the concept and practice of multidisciplinarity in Eastern Europe primarily, but also in North Africa and the Middle East, by developing regional teaching courses and stimulating access to EANO travel and exchange programs. In the next two years the development of European guidelines will be further expanded to cover the major tumor types. It will be

crucial to have input not only from experts but also from the national professional medical societies and brain tumor patient organizations in order to afford maximal awareness, understanding, and dissemination of these guidelines. I very much enjoy being busy with my work but I try and find time to relax by reading travel books and of course then travelling. I love France, North America (where I have family) and Africa where I very much enjoy seeing wild animals in their native habitat. In my free time I am also a boardcertified sommelier. n

At The Christie: a successful display for International Brain Tumour Awareness Week 2012 THERESA Breen, Radiotherapy/Rare Tumours Research Nurse at The Christie NHS Foundation Trust in Manchester (UK), decided it would be a good idea to promote the 2012 International Brain Tumour Awareness Week (which ran from 28th October to 3rd November) on a large display stand in the main corridor of her hospital. Theresa told the IBTA: “This is a prime location for people to be able to observe and read the information, as well as pick up and take away any reading material. Grey ribbons (brain tumour colours) were also made and handed out to anyone who wanted to pick one up and wear with pride! “All the information provided by the IBTA flew off the shelf and we had to replenish stock every day”. Theresa added: “I made posters directing people to the stand and put these in the outpatient and rehabilitation departments which encouraged patients, caregivers, doctors and other healthcare professionals to visit our stand.” “Other publications on the stand gave information on brain tumours

Above: During the 2012 International Brain Tumour Awareness Month, there was an attractively laid-out display stand in the main corridor of The Christie Hospital in Manchester, UK, organised by nurse Theresa Breen

STOPhersentumoren

is GO!

THE Netherlands brain tumour organisation STOPhersentumoren.nl Foundation had a very busy year in 2012. Chairman of the Board Klaske Hofstee advised the IBTA that they screened a 30 second television advertisement on Dutch TV which ran for three months and raised awareness of the challenges of pediatric brain tumours. The advertisement was produced by director Danny Maas and shows a family’s journey from the initial diagnosis of their little boy. STOPhersentumoren also planned four awareness-raising walks called “Walk4 Brains” in different locations in The Netherlands on 3rd November, during the International Brain Tumour Awareness Week. The organisation distributed Euros 585,885 to five researchers. STOPhersentumoren has also contacted 10,000 general practitioners to inform them of the Foundation’s existence. n

Above: One of the promotional posters at The Christie’s brain tumour awareness-raising display

Above: A still photograph from the STOPhersentumoren television advertisement

including statistics, treatments, clinical trials and rehabilitation. The rehabilitation department at The Christie provided interesting posters which contained useful information for patients and relatives”. Theresa said: “The success of our stand during the 2012 International Brain Tumour Awareness Week encouraged me to want to do it all again for the UK’s own brain tumour awareness month which falls in March every year.” n

Subscribe to the IBTA’s regular electronic news bulletin. Visit www.theibta.org

Brain Tumour

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Pediatric High Grade Glioma: Identifying Which Patients can be Helped with Chemotherapy. The Journey of the HIT-GBM Group By Johannes E Wolff, MD Tufts Medical Center, Boston, Massachusetts, USA, on behalf of the HIT-GBM working group

The parents or loved ones of someone who has been diagnosed with a life-threatening brain tumour sometimes believe that the reason we do not have a cure is that the researchers have not been diligent or persistent enough. Often people do not understand that research can be slow and painstaking and when a research group commences with an objective in mind the researcher might be diverted to more promising avenues that were not initially believed to be relevant. In this article Dr Johannes Wolff describes the persistent work during a twenty-five year period of a German research group that has been studying paediatric high grade gliomas. Above: Dr Johannes Wolff visits the IBTA display stand

THERE are many names for brain tumors with devastating prognoses that are combined in the group of “high grade glioma”. Glioblastoma multiforme (GBM), anaplastic astrocytoma (AA), diffuse intrinsic pontine glioma (DIPG) are the more common terms in children. We know little about differences and which treatment works better for which subtype. As we are treating them similarly, we may as well combine them in a big diagnostic umbrella - that will at least allow us to collect meaningful data to be analyzed. Yet, there are also reasons not to combine all in one group. What if there is a treatment that only helps one subgroup, but rather hurts another subgroup? If we treat them all the same, the average outcome will look as if there was no treatment effect at all, and we will miss the chance for improvement.

The journey of the HIT group This story of the journey of the German pediatric brain tumors group teaches us that neither a special treatment for each subtype, 14

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at the ISPNO Conference held in Toronto in 2012

nor treating them all the same is the right way to go. Instead we should look for a third way: analyze the data in groups, but not in the groups of the old histological diagnoses. Instead, form new groups, and improve the grouping by analyzing treatment effects. The late Professor Dr Joachim Kuehl from Wuerzburg was the founder of the HIT working group. (The name “HIT” is a short form for the German word for brain tumor.) In 1987 the HIT group started the first multicenter intensive chemotherapy trial for children with malignant brain tumors of any kind, including medulloblastoma and high grade glioma. It showed that multi-agent chemotherapy was actually doable in children with brain tumors. There were surviving patients, but without a control group of patients we could not show that the protocol was superior to other treatments. Therefore we started HIT-91, a randomized protocol comparing intensive chemotherapy

given prior to radiation to a conventional protocol, which started with radiation. While the protocol was ongoing, it appeared that high grade glioma patients did not do well on either arm of the protocol, and needed a new concept. There were not enough high grade glioma patients in the study population to launch a randomized trial for high grade glioma patients only, and we did not want to go back to single arm trials that could never show superiority of any protocol. Therefore we invented a new study type: the prospective cohort comparison study. All patients were treated the same at any given time, but the protocols changed over time, and after enough data were accumulated, any protocol was to be compared to the data of all the others. Those protocols were named HIT-GBM-A , -B, -C, and –D. HIT-91 continued as a medulloblastoma protocol and eventually showed that the intensive chemotherapy given prior to radiation did not result in superior survival. Radiation first became standard of care for average risk medulloblastoma.

Surprising results However, a surprising result was found when analyzing the first high grade glioma patients treated in the same randomized study. While the preliminary results had appeared so poor that the study arm had been closed, follow-up data showed a surprisingly high number of survivors. Moreover, the treatment effect was opposite to medulloblastoma: survival results were better for the patient group treated with intensive chemotherapy first. This taught us to not put all histological diagnoses together and treat them alike any more. Additionally, the improved survival was


Above: This is an example of a slide that you might see at an oncology scientific conference. In this case it describes the design of part of the HIT-GBM group’s overall study. Experienced researchers can look at this slide and obtain an immediate understanding of what is being described. You don’t even have to understand the presenter’s native language Above: Dr Wolff is a firm believer that the work has to be fun as well and there is nothing more enjoyable than the laughter of a patient

only true in a further subgroup of high grade glioma: patients in whom the tumor had been macroscopically completely resected. Of particular note was that in high grade glioma even a “gross total resection” leaves infiltrating tumor cells behind. It is easy to understand why patients do better when more tumor is removed. But how can a treatment protocol only be helpful after gross total resection in a randomized trial, where there are two treatment arms, both of which have patients with complete resection? There are really only two explanations: either a) the tumor cells that infiltrated and were left behind have a different biology leaving them sensitive to specific protocols, or b) the tumors that are amenable to complete resection have a different biology with margins easier to resect yet also molecularly distinct and sensitive to this chemotherapy, while the others are not.

Time for analysis After a decade of data collection, the time had come to harvest analyses and make decisions. The HIT-GBM protocols had become more popular and patient numbers increased. By the time the fourth of these trials (HIT-GBM-D) was to be designed, the patient accrual had actually reached a level that made a randomized trial for high grade glioma feasible. Now we had an instrument but, what should we study - a group consensus was necessary. The successful protocols HIT 87 and -91 had used a large number of

different drugs. It was unclear which of those drugs actually helped the patients. The group decided to invest the new opportunity for answering a research question with a randomized clinical trial into one specific burning topic: high dose methotrexate, a single drug. In September 2003 the first European patient was randomized into a pediatric high grade glioma study. This was a glioblastoma patient from Hamburg, Germany, and the randomization result was arm “M”. He received two cycles of high dose methotrexate before the radiation started. While the accrual of the HIT-GBM-D protocol increased, the data of previous protocols had matured, and the concept of the prospective cohort comparison could finally be completed.

Another suprise The result was a surprise again: one of the three protocols, HIT-GBM-C, was superior to the two others. This protocol had used intensive chemotherapy given during radiation and continued thereafter. The two others had less intense metronomic therapy (HIT-GBM-A) and immunotherapeutic (HIT-GBM-B) concepts. However, the benefit of the chemotherapy was again restricted to only those patients in whom gross total resections had been archived. This validated the results of HIT-91, and showed that the prospective cohort comparison was a meaningful alternative to a randomized trial.

In 2013 we are analyzing the outcome of the randomized HIT-GBM-D protocol, and also of the total database, which by now has data of 1200 pediatric high grade glioma patients. While numerous data items still need to be validated before they can be published in a scientific journal, a new factor has become obvious: patient age. The benefit of certain chemotherapy drugs such as methotrexate on tumors differs not only between pediatric and adult tumors, but also within the pediatric population among different age groups. As tumors differ on the molecular level between younger and older children, the drug effect findings now create new hypotheses relating to how molecular mechanisms determine the drug effects.

A better future for children with high grade glioma Over more than two decades, the group has completed eight prospective clinical treatment trials, collected tumor tissue and followed patient outcome of over 1000 patients, to finally come to a position which allows us to go back into molecular analyses and identify which patients can benefit from which protocol. Most likely the answers will be more sophisticated than patient age or the histological type. With such answers, the future of the next generation of children with high grade glioma will be brighter than those in the past who helped generate the data. In the future, we will hopefully be able to select effective agents, and avoid toxicity from ineffective drugs. n Brain Tumour

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Brain Tumour Ireland (The Ronnie Fehily Foundation): one family’s amazing work

BrainTumourIreland.com Brain Tumour INTERNATIONAL Brain Tumour Awareness Week 2012 saw the birth of a new Ireland

member of the international brain tumour community - Brain Tumour Ireland (The Ronnie Fehily Foundation). The new charity is the first nationwide organisation dedicated to brain tumours in Ireland.

Founding Brain Tumour Ireland Ronnie’s story Brain Tumour Ireland was set up by a County Wicklow family in memory of their mum, Ronnie Fehily, an otherwise healthy 62 year old, who was diagnosed with a grade four brain tumour (glioblastoma multiforme - GBM) and sadly passed away in January 2012. Ronnie was a fun-loving, energetic mum of four. She loved sport, particularly swimming and field hockey. She was also passionate about horses, caring for, and competing on, many ponies and horses throughout her life. She passed this love of animals and sport on to her family. Ronnie was a very caring and giving person; someone who always had time for other people. She loved to entertain, and her house was always open - somewhere her children’s friends and cousins loved to visit when they were growing up. Ronnie would be ready with wise words of advice if someone was in trouble. Her first grandchild was born in 2010, and she doted on the newest member of the family; they had a great relationship. Ronnie is survived by her four children and an extended family based in Dublin, Wicklow, Kilkenny, Kildare and Galway. 16

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Above: Brain Tumour Ireland launched in Dublin on Saturday, 3 November 2012. Pictured are (left to right, standing at the back): Simon Roche (son of Ronnie Fehily), Niall Roche (son of Ronnie), Caroline O’Leary (sister of Ronnie), Jimmy Doyle (brother-in-law of Ronnie), Sandra Doyle (sister of Ronnie), Kathy Oliver (founding Co-Director of IBTA), Jane Fleming (Consultant in Palliative Medicine) Stephen McNally (Consultant Neurosurgeon) and Liam Burke (brain tumour survivor). Front row (left to right): Cliona Doyle (niece of Ronnie), Naomi Roche (daughter of Ronnie), Natasha Smith (daughter of Ronnie) and Caroline Kane (brain tumour survivor)

During her short illness, Ronnie’s family found that aside from the excellent care she received from her doctors and nurses, there was very little information or support available in Ireland for brain tumour patients and their loved ones. After she passed away, Ronnie’s four children decided they would like to do something for other people in the same situation in which they had found themselves. They wanted to ensure that brain tumour patients and families

had somewhere to turn if they needed information or support of any kind. Together with their extended family they set up Brain Tumour Ireland (The Ronnie Fehily Foundation).

Brain Tumour Ireland’s mission The first aim of the charity is to raise awareness of brain tumours, a subject not often talked about in Ireland. The second goal of the charity is to provide information and support to brain


Above: Brain Tumour Ireland held the first ever Irish leg of the IBTA’s “Walk Around the World for Brain Tumours” on Saturday, 18 November. Approximately 125 people participated

tumour patients and their families. Despite the excellent medical staff caring for brain tumour patients in Ireland, families can often feel confused and alone after a diagnosis. Brain Tumour Ireland aims to provide a place for people to turn to if they have questions or need support. There are three existing support groups for people with brain tumours in Ireland based in Dublin, Cork and Galway. Brain Tumour Ireland helps to direct patients and their loved ones towards these group meetings, where they can find peer support. Brain Tumour Ireland also hopes to provide capacity building support to these groups. The charity’s website at www. braintumourireland.com is designed to be an information hub for anyone looking to find out more about brain tumours or looking for support. It also contains news about the charity’s activities including fundraisers and events. The third, and more long-term aim of the charity, is to fundraise for medical research on brain tumours. This is currently very underdeveloped in Ireland. Latest statistics show that only 2% of cancer funding from the Irish Health Research Board goes into brain tumour research in this country. The work towards achieving these aims is carried out by an enthusiastic team with a mixture of youth and experience! Brain Tumour Ireland is a family charity, with different members of Ronnie Fehily’s family taking on different roles. Each member of the group brings a different skill to the table including finance, fundraising, media relations/PR, event management, social work and IT expertise.

The launch during International Brain Tumour Awareness Week 2012 Brain Tumour Ireland was officially launched in Dublin on Saturday, 3 November 2012, during International Brain Tumour Awareness Week. The new charity was delighted to have the support of the International Brain Tumour Alliance (IBTA) on the day, and was honoured to host IBTA’s founding CoDirector Kathy Oliver as a guest speaker. Kathy spoke brilliantly about her personal story and the work of the IBTA. She also spoke of the challenges facing those living with a brain tumour and of the Brain Tumour Patients’ Charter of Rights which IBTA developed. Another guest speaker was Mr. Stephen McNally, Consultant Neurosurgeon from Beaumont Hospital in Dublin, who gave a comprehensive overview of the medical situation in Ireland. Two Irish brain tumour survivors, Liam Burke and Caroline Kane, also gave inspirational speeches about their patient journeys, explaining what life was like for a brain tumour patient in Ireland. Brain Tumour Ireland was delighted to receive lots of media coverage around the time of its launch, featuring in the national newspapers and on Irish TV and radio. The charity was also grateful for the support of some high profile Irish celebrities including broadcasters, DJs and sports stars.

Walk Around the World For Brain Tumours

the first ever Irish leg of the IBTA’s “Walk Around the World for Brain Tumours” on Saturday, 18 November. The charity used the opportunity to highlight the low levels of funding for Brain Tumour Research in Ireland (mentioned above). The walk was a great success and the approximately 125 participants donated 500 symbolic kilometres from the walk to the IBTA’s target of circling the Earth, to help raise awareness of brain tumours. The event also raised funds for Brain Tumour Ireland and we hope to do something similar, but on a bigger scale during the 2013 International Brain Tumour Awareness Week.

Plans for 2013 Brain Tumour Ireland is planning to hold a consultation day in April 2013 bringing patients, families and medical personnel together to talk about the situation for brain tumour patients in Ireland. It is hoped that the information gathered on this day will form the basis for a patient manifesto or charter, which will aim to improve the situation for those with brain tumours in Ireland. Additionally, the charity will hold some fundraising events this year, including a golf classic in May. The charity is also extremely grateful to all the people who have offered to hold their own fundraising events in aid of Brain Tumour Ireland in 2013. The future is bright for Brain Tumour Ireland, and we look forward to a long and productive working relationship with our friends and colleagues in the International Brain Tumour Alliance. n

From the IBTA E News January 2013 Massage: A study by ST Keir of Duke University (USA) and published in the BMJ Supportive and Palliative Care journal found that distressed brain tumour patients who received eight massages over a four-week period experienced significant improvement in their distress level. n

Brain Tumour Ireland began its fundraising activities soon after its launch by holding Brain Tumour

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“Do you know what I most want? To get well, and to be the way I used to be.” By Razvan Ionut Stupinean, age 15 Micestii de Campie, Bistrita-Nasaud, Romania

M

y name is Razvan Ionut Stupinean. I am 15 years old, living at the countryside in a beautiful house, together with my parents and my two younger brothers. I like to repair bicycles and to play football with my friends, and to take care of animals. I am very fond of chickens, geese, rabbits, dogs, cats, lambs, horses and cows. We have many animals around the house and I like to take care of them. I feed them, I give them water everyday, and I collect the eggs from the hens. I clean the rabbits’ place, I pick them grass and I play with them. I have a neighbor who taught me how and lets me to milk his cow. I like to help people on the field. I know how to spade, to plant, to make hay around the house. I like school, because it is the place where I meet many children and we learn to play together. I have many friends at school that I dearly miss. I like the culture of bees and I am looking forward for the summer to come so I can be there with them, to take the honey from their beehive together with Mr. Vilut. I’ve been helping him for four years, since we became friends. He taught me many things about bees. I know how to take the honey out, how to prepare it, how to spin it and let it flow down. My brothers and Mr. Vilut’s children help us also. All things I used to do I stopped doing as I couldn’t do them anymore. I started to feel sick in the summer of 2012. I couldn’t eat, I was angry, I had headaches, and I didn’t feel like going to school or playing. I felt there was nothing I wanted to do, 18

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Above: “You’ll see. I will get better and go biking again!” says 15 year-old Razvan Ionut Stupinean from Romania

that I didn’t have the strength to do anything. I was feeling worse and worse. So we went to the doctor. As the doctor saw the way I was losing my balance she thought I had something. She sent me to Bistrita for a CT-scan of the brain. After we received the results I was told I had a brain tumor and that we needed to go to Cluj-Napoca for surgery. I didn’t get scared when I heard this, yet it was very hard for me. After I woke up [from surgery], I noticed I couldn’t walk or talk. In the beginning I could only say “yes” or “no”. It was very hard for me, but for my mother also, not to understand each other and not be understood. Since then I learned to speak with my mother using all kind of signs. I trusted I would be well again.

Mummy told me I need to go to another hospital so I could get well. There I had chemotherapy and radiotherapy. After the first cycle of chemotherapy I started feeling better, I could walk if there was someone to give me a hand; I started talking, and playing with the other children from the hospital. “Did you go to buy me a juice?” was the first question I asked my mother after a long time. When she heard me talking she was very happy and she started to believe that I’d be well. After we went home I started to walk lighter, to eat by myself and to talk more. As I saw the other children that they can do whatever they want to do I became more upset and eager to get better. As winter came, children were sledging. I was watching them from the window and encouraging my mother that next year I would be playing together with them and making a snowman. I missed the play, the snow. So I used to go out, grab it in my fists so I could sense it in my hands. I was longing to go fishing again to the lake, which is not very far from my house. I hope I’ll go biking again, because I couldn’t do it anymore since I got ill in September. Then I told my brother, “You’ll see. I will get better and go biking again!” I was angry I couldn’t go to school together with my mates. All my teachers and colleagues visited me at home and encouraged me. Mum has been helping with everything and for this I want to thank her. Do you know what I most want? I want to get well, and to be the way I used to be. And what I want for the other children is to never get ill and never suffer. n


Stolen from my world By Mihaela-Cristina Moldovan Cluj-Napoca, Romania

H

ello, my name is Mihaela-Cristina Moldovan, I am 24 years old and I am living in Cluj-Napoca, Romania. Althought eight years passed since my diagnosis I remember everything as if it was yesterday. I was going on 16 and as many could say, my life had just started. Who would think it could have easily ended? It was the summer of 2004, a summer with a sad story, but with a happy ending. I had just finished the 9th grade and was looking forward to the beginning of the new school year and the surprises of high school. In that moment I was a perfectly normal teenager, never thinking that once I would tell my story. But the story which changed my life forever could be anyone’s story. I was a high school student in the “Iulian Pop” economic College in ClujNapoca and I was convinced that the most important thing in my life was my career. Only later I realized how wrong I was. I remember the summer when I suddenly started to feel bad (headache, dizziness) and I decided to see a doctor. After a month of treatment for anemia I noticed that the symptoms I’d been suffering didn’t improve but worsened, became more intense. In the meantime, school started and I was sent from school to see a neurologist. I was convinced I needed to wear glasses again and I was very sad that day because of this thought. But something totally different happened. I underwent a lot of analysis (ophthalmic, radiologic, EEG and psychological checks). In this period I was even more disoriented, and I started to have problems with my balance and to see double. At the end of October I was sent for a CT-scan that was going to give a straight answer to what was happening with me. Posterior fossa medulloblastoma, grade

Above: Mihaela-Cristina Moldovan said of her brain tumour journey: “I certainly learned a lot from the people around me, about life and first of all about MYSELF. I know that without the support of the people who loved me, even in my toughest moments, I could not be here today to tell you about my experience.”

IV. I would never forget this diagnosis, yet at the beginning I wasn’t able to say it correctly. It is strange to see how suddenly nothing was as important as before. So I woke up in a room, in a brand new setting, being stolen from my world, from the world I knew, far away from my friends and being forced to adjust. To sit and to listen to “new people” who wanted the best for me. What happened after, you all know it quite well: surgery, chemotherapy and radiotherapy. Eight months which completely changed my life. I learned what hope, compassion, friendship and unconditional love meant. I don’t know how I would have dealt with it without my dear ones. My mother was there for me, all the time, and my younger brother was visiting me very often although it was before his final exam, being in the 8th grade.

He used to come by foot, on a long walk to the hospital, yet it was winter, only to see me and to be there for me, to tell me a few encouraging words, a joke maybe. I felt a lot of feelings. I was afraid, I hoped, I dreamt, but look at me today! I know that without the support of the people who loved me, even in my toughest moments, I could not be here today to tell you about my experience. Honestly, I learned that without suffering there is no happiness, or we can’t recognize happiness in its absence. When the night ends and the curtain goes up, we have so much to fight for and to be happy for. I dearly recall, that except the hard time, I had part of beautiful moments as well. I am not saying it was easy. But I certainly learned a lot from the people around me, about life and first of all about MYSELF. n Brain Tumour

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Information books for brain tumor patients in Romania: compiled with compassion and understanding By Dana Cernea, MD, PhD, radiation oncologist Institute Professor Ion Chiricuta, Cluj-Napoca, Romania

My name is Dana Cernea, MD, PhD at Oncology Institute “Professor Ion Chiricuta” Cluj-Napoca, Romania. Since 1995 I have specialized in radiation treatment in pediatric and adult brain tumours. The number of adult patients with brain tumours is increasing in our institution because of better awareness of the disease and also better access by patients to diagnosis and treatments we offer here. Patients have become more and more interested in their disease. They ask how and why these brain tumours arise, what are the factors involved in the mechanisms of carcinogenesis and if brain tumours can be prevented.

Questions answered They and their families also want to know more about treatment modalities available (surgery, radiotherapy, chemotherapy) and their results in terms of survival and quality of life. Patients ask us a lot about healthy eating and alternative treatments. We try to inform them about the possible toxicities of different treatments, how radiation treatment planning is done, what are the first signs of a possible recurrence and which is the best treatment. Sometimes it is very difficult to explain everything clearly and that’s why we decided not only to talk with our patients but also to write two guides about brain tumours and their treatment - one for adults and one for children.

A guide for adult brain tumour patients The title of our adult booklet is “A guide for patients with brain tumors” (in Romanian: “Ghidul pacientilor cu tumori cerebrale”). 20

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Above: The front cover of the guide for adult

Above: The front cover of the Romanian guide for

brain tumor patients in Romania

pediatric brain tumor patients

The booklet contains information about brain anatomy, risk factors for brain tumours, signs and symptoms of disease, diagnosis, treatments, possible side effects of treatments and how to eat healthily.

Oncology) protocols. The most frequent solid tumours in our paediatric department are brain tumours. Our booklet on brain tumours for children was written by health professionals in order to familiarize the parents with the disease and the different kinds of treatments and their side effects. It was also written to advise parents how to help their children to manage difficult situations arising from the brain tumour diagnosis. In the booklet, there are also some pictures of children who are long-term brain tumour survivors. These photographs bring hope to our paediatric brain tumour community in Romania. These guides have been made with compassion and understanding for our patients and their families. n

A guide for pediatric brain tumour patients In our Institute we have also a Paediatric Department where three doctors and ten nurses are employed. They care for children suffering from all kinds of malignant disease. There are 40 beds for children being treated with chemotherapy and/ or radiotherapy for solid tumours or haematological malignancies. For the majority of paediatric patients with this disease we have adopted the SIOP (International Society of Paediatric


From the IBTA E News December 2012

Walking for brain tumour awareness in Western Australia Walkers from Perth in Western Australia took part in a six-kilometre awareness-raising walk during the 2012 International Brain Tumour Awareness Week. Emma Amozig, research officer for the Australian Genomics and Clinical Outcomes of Glioma (AGOG) project, forwarded

this photo of the walk to the IBTA. On the far left, back row, is Professor Anna Nowack who treats many brain tumour patients in Western Australia and is a prominent clinical trial investigator. Fourth from the right is Ingrid Nilsson, who has returned to the role of coordinator for AGOG. Despite her isolation in Australia’s most western capital city, Ingrid was able to assist the IBTA with several important database tasks during 2012 for which we are grateful. n

We take cancer personally

Swallowing and voice problems after neurosurgery: Experts from Johns Hopkins (USA) are recommending that patients who have had “benign” vestibular schwannoma tumours resected from the base of the brain should be given early post-surgical assessment within 24 hours for trouble chewing, swallowing food and speaking normally. Timely assessments like this, doctors say, can minimise later complications. n

Raise awareness of the challenges of brain tumours - plan an event for International Brain Tumour Awareness Week 2013 (27th October to 2nd November)

Patients are at the heart of everything we do at Roche. They motivate and inspire us to search for and develop innovative medicines and therapeutic solutions with the goal of transforming the lives of people with cancer around the globe. We’ve come a long way, but there’s still a long way to go.

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A role for blood tests in brain tumours? By AysegĂźl Ilhan-Mutlu MD and Matthias Preusser MD Medical University of Vienna, Department of Medicine I, Clinical Division of Oncology, Comprehensive Cancer Center Vienna-Central Nervous System Tumours Unit, Brain Tumour Research Laboratory, Austria.

Blood tests in medicine There has been a huge increase in the research of circulating biomarkers and early diagnostic markers in medicine. Currently, simple blood tests analysing the presence of certain markers might contribute to the diagnosis of distinct diseases. For example, detection of a heart muscle protein in the blood, namely troponin-T might lead to a diagnosis of a heart infarction, since this protein is released into the blood in case of death of heart muscle cells. Similar blood proteins have been shown to be relevant in the early diagnosis of kidney injury, severe infections and finally in distinct oncological diseases. Analyses of blood have several advantages. Blood collection is associated with little burden on the individual and it can be done repeatedly within a disease course or during routine check-ups. Furthermore, the cost of blood analyses remains very low when compared to radiological imaging or histological investigation of surgically removed tissue. Therefore identification of such blood tests is of interest for the early diagnosis of a disease. There are several blood analyses which are currently in use for oncological diseases. The rationale for using these proteins as blood markers is based on the fact 22

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that these are highly present within the tumour cells and will be released into the circulation during the disease course. These proteins are mostly not only early diagnostic markers, but these could be used within routine control of the patients in order to evaluate the recurrence of the disease.

Our findings on the alterations of blood markers in glioblastoma Glioblastoma is the most common and aggressive primary brain tumour in adults. Diagnosis of glioblastoma is based mainly on radiological imaging and histological investigation of the surgically removed tissue. Although there are some studies with regard to the changes of circulating biomarkers prior to the diagnosis of glioblastoma, there still exists a lack of knowledge in this tumour entity. In one of our group’s previous studies, we have shown that a brain tissue specific protein, namely GFAP (glial fibrillary acidic protein) was present in the blood of a specific group of glioblastoma patients before resection of the tumour, whereas this protein was not present in the blood of control patients.1 Interestingly, we also detected high levels of GFAP in a rare case of metastatic myxopapillary ependymoma and are currently investigating this marker as a potential follow-up parameter in a larger cohort of patients with this diagnosis.2

In another study, we looked for the presence of microRNAs in the blood of glioblastoma patients before and after resection of the tumour.3 MicroRNAs are a specific class of genetic material, which can be released from the cells. MicroRNAs are very small molecules and can control the function of proteins. We analysed the presence of microRNA-21, a very important microRNA in oncology, in the blood of glioblastoma patients using molecular genetic methods. Interestingly, microRNA-21 levels decreased dramatically after resection of the glioblastoma. In this cohort, microRNA-21 did not decrease in only one patient after tumour removal. Surprisingly, this patient developed a very early recurrence. Based on these results, we suggested that microRNA-21 could be a circulating biomarker for glioblastoma patients. In another observation, we collected as a part of a prospective study, blood specimens of atrial fibrillation patients.4 A panel of brain tissue related proteins was analysed within the collected blood samples. Interestingly, three brain tissue related proteins, namely NPY, S100B and SCGN were very high in three of 191 patients. After evaluating the medical records of these three patients, we found that two out of three patients developed a malignant glioma one year after the collection of their blood samples. This could indicate that the combination of these three proteins could be detectable in the blood of brain tumour patients, even one year before manifestation of the tumour. Motivated by these previous observations, we would like to test whether these brain tumour related


References: 1. Ilhan-Mutlu A, Wagner L, Widhalm G, Wöhrer A, Bartsch S, Czech T, Heinzl H, Leutmezer F, Prayer D, Marosi C, Base W, Preusser M. Exploratory investigation of eight circulating plasma markers in brain tumour patients. Neurosurgical Review, 2012. 2. Ilhan A, Furtner J, Birner P, Rössler K, Marosi C, Preusser M. Myxopapillary ependymoma with pleuropulmonary metastases and high plasma glial fibrillary acidic protein levels. Journal of Clinical Oncology, 2011. 3. Ilhan-Mutlu A, Wagner L, Wöhrer A, Furtner J, Widhalm G, Marosi C, Preusser M. Plasma microRNA-21 concentration may be a useful biomarker in glioblastoma patients. Cancer Investigation, 2012. 4. Gartner W, Ilhan A, Neziri D, Base W, Weissel M, Wöhrer A, Heinzl H, Waldhör T, Wagner L, Preusser M. Elevated blood markers 1 year before manifestation of malignant glioma. Neuro

Above: Members of the Brain Tumour Research Group of the Comprehensive Cancer Center Vienna,

Oncol, 2010.

Central Nervous System Tumours Unit, Medical University of Vienna, Austria. Left to right: Anna Sophie

5. Ilhan-Mutlu A, Wagner L, Wöhrer A, Jungwirth

Berghoff, Carina Dinhof, Orsolja Rajky, Matthias Preusser, Aysegül Ilhan-Mutlu

S, Marosi C, Fischer P, Preusser M. Cancer Investigation, 2012.

proteins and microRNAs are present in the blood of brain tumour patients prior to tumour manifestation in an independent cohort.5 For this purpose, we screened the patient cohort of a prospective study, which took place in Vienna. The VITA (population-based Vienna Transdanube Aging study)6 is a prospectively designed, longitudinal, population-based cohortstudy enrolling 75-year-old inhabitants of two districts of the City of Vienna (Austria). The purpose of this study is to evaluate parameters for early diagnosis of Alzheimers´ disease. To this end, blood samples and neuropsychological, geriatric, neurological, and psychiatric parameters of the participants are taken at three time points, namely at baseline, 30 months and 60 months follow-up. Of the 606 participants included in the VITA study, only one patient was diagnosed with a glioblastoma. We had the exceptional opportunity to investigate plasma samples taken six, 36 and 66 months before tumour manifestation in this index patient. In addition, we used plasma samples from ten subjects in the VITA cohort (five male, five female) as controls. We chose to investigate plasma concentrations

of four microRNAs, which could have a diagnostic potential for glioblastoma patients based on the results of previous reports, namely microRNAs 21, let-7, 128 and 342-3p. Additionally, we have selected S100B, SCGN and NPY as these markers were previously shown to be markers for malignant glioma. Six of the seven selected markers investigated in our study did not show distinct plasma profiles in our index patient as compared to control subjects. Only microRNA-21 showed an up to fourfold increase in its plasma concentration, while it showed a statistically significant decrease over time in the control patients. Although our results have to be interpreted very cautiously, they may indicate that microRNA-21 plasma levels are associated with gliomagenesis.

In conclusion Identification of blood markers may facilitate the diagnosis and the therapy follow-up management of brain tumours. New advances describe novel molecules with potential relevance as circulating biomarkers for brain tumours. However, in order to use these molecules in clinical routine, establishment of large prospective studies are mandatory. n

6. Fischer P, Jungwirth S, Krampla W, Weissgram S, Kirchmeyr W, Schreiber W, Huber K, Rainer M, Bauer P, Tragl KH. Vienna Transdanube Aging “VITA”: study design, recruitment strategies and level of participation. Journal of Neural Transmission, Supplement, 2002.

From the IBTA E News October 2012 Cancer and movies: In a study of 82 movies that centre on a person with cancer, presented to the 2012 ESMO meeting in Vienna, Italian researchers found that there was often a disconnection between the scenario portrayed in the movies and what is happening in the treatment clinic. They also found that relatively rare leukaemia, lymphomas and brain tumours predominate among the movies. Death from cancer occurred in 63% of all movies. Dr Luciano De Fiore told IBTA CoDirector Kathy Oliver that 14 of the 82 movies they studied dealt with a patient with a brain tumour. n

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A British neuro-oncologist in Africa By Dr Kirsten Hopkins University Hospitals Bristol NHS Foundation Trust, Bristol, UK

WHAT enticed a British neuro-oncologist to visit Uganda - and return three times? Rather randomly, I was invited to teach physicians in 2003, at a time when there was no oncology service in Mbarara, Uganda’s second largest city. The country was reeling under HIV infection in a setting where many individuals lived in extreme poverty, and cancer care was a low priority. It has been my privilege to witness the changes since then, which have led to the point where oncology is appropriate and relevant in Mbarara. An excellent HIV service was established, with US aid. Unfortunately however, access to effective anti-retroviral medication actually increases the numbers of patients who survive to develop malignancies, including cerebral lymphoma - a dreaded complication.

The challenge of cerebral metastatic disease Gliomas are rare in the Black African population (why? is there something to learn?), but occur in the Asian ethnic group, and with increasing prosperity and Western ‘sins’ (smoking, fatty diet, alcohol) lung, breast and bowel cancers are increasing. With these will come the challenge of cerebral metastatic disease. Finally, Internet access has increased awareness, and patients in Mbarara buy chemotherapy in private ‘clinics’. A proper service is needed urgently. The challenges are however significant. There was no clinical space for oncology, no specialist nurses or pharmacist and no oncology staff. Uganda has no GP service, and most patients present with advanced disease. Crowded surgical wards increase delays, infections and complications. Pathology reporting is variable and until recently there was no scanner in Mbarara - and, even now, no radiologist. Separate clinical ‘empires’ exist with little 24

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Above: Dr Kirsten Hopkins at the gate of Mbarara University Hospital, Uganda

communication - lacking the concept of MDT working cherished in the UK. The situation regarding radiotherapy is desperate. There is one high energy radiotherapy machine in Kampala serving 32 million people - in the UK, they would expect about 120 machines. Many common malignancies in Uganda - prostate, cervical and head and neck cancers - could actually be cured by radiotherapy, whilst patients presenting with advanced disease can be effectively palliated. In a context where neurosurgery is virtually non-existent, treatment of spinal cord compression with radiotherapy could avert paralysis and death. Two goals are self-evident: 1. Oncology development in Mbarara 2. Radiotherapy expansion throughout Uganda

Bristol colleagues assist Ugandan initiatives With these in mind, Bristol colleagues have undertaken several projects to assist local Ugandan initiatives. I teach

oncology to postgraduate physicians, and recent trainees who, knowing ‘oncology is coming’, are considerably more enthused! In 2007, Dr Omoding came to Bristol from Uganda for training, during which time he audited the outcomes of patients with HIV-related cerebral and systemic lymphoma. Dr Omoding subsequently trained in oncology in Seattle before returning to Kampala with a remit to develop a satellite service in Mbarara.


from Bristol visited Mbarara, and perhaps unsurprisingly was instantly put to work - hopefully giving the local radiographers some respite! Kate returned to Bristol exhilarated, and inspired others when presenting about her work. She returns to Kampala in May 2013 with a training team from the University of West of England to scope the feasibility of a structured link between the radiography training schools. Above: The only Ugandan high energy radiotherapy machine - the cobalt unit in Kampala

A current registrar, Dr Tibandera, has trained to assist Dr Omoding and care for oncology patients between his visits. In 2012, I visited Mbarara with a chemotherapy pharmacist, Becky Bagnall, to demonstrate this role. How incredible to see the progress! Dr Omoding ‘attended’ from Kampala for the second ‘satellite clinic’, and he, Dr Tibandera and I provided an oncology service, reviewing cases, organising investigations, adjusting symptom control and prescribing chemotherapy. Becky rolled up her sleeves and prepared chemotherapy, advised medical staff and taught chemotherapy nurses and new patients about side effects and precautions. Local staff saw the value of her role, and will establish a post for the new unit. Finally, space has been identified for a centre, and we prepared an application for funding for the build.

But what about radiotherapy? Radiotherapy machines are expensive, and the linear accelerators preferred in Western countries would fare poorly with the Ugandan electricity supply. Cobalt units are a robust option, and The International Atomic Energy Association (IAEA) offers help to move these to low income countries to make cancer care accessible. There are plans for more machines in Kampala and development of other centres. However - machines need staff, and there are only five trained radiographers in Uganda. In practice, the machine is usually run by two staff, working 7am to 1am, treating 1300 cases per annum. This horrendous workload allows no time for training staff to expand the service. In 2010, Kate Anders, a radiographer

Above: Staff in the cobalt unit in Kampala (photo

So where are we now? Well - making progress! Regular oncology clinics run with a reliable chemotherapy drug supply. There is agreement for oncology and pharmacy posts in Mbarara, and overseas staff may apply. Two local nurses support the service, and will undertake training in Kampala. Space for the centre is ring-fenced, plans drawn and the bid is in. Uganda has developed an Atomic Energy Council which was necessary before negotiations with IAEA for cobalt machines could start. A transport and hostel service for patients requiring radiotherapy has been established by Hospice Africa. I feel so fortunate to be part of this. Back in the UK, staff who have visited Uganda sigh when they reminisce - be it mountain gorillas or curries in Kampala, white water rafting on the Nile or playing pool in Mbarara’s night clubs, everyone returns with stories of magical times. It’s a country of hugely friendly people as keen to develop their services as we are to help. If you get the chance to participate, don’t hesitate! n

At least 200,000 people worldwide will develop a malignant primary brain tumour this year and most will not receive an appropriate standard of care. Source - IBTA commissioned research.

taken by flashlight during a power cut!)

If you are interested in the work in Uganda, you are welcome to contact Kirsten Hopkins (details below). If you are an oncology health professional and might wish to work in Uganda for a spell, Dr Hopkins can give you contacts. If you could support the present projects then donations which in the first instance will cover the costs of the radiographers’ visit are very welcome: ‘The Bristol Radiotherapy Meetings Fund’ National Westminster Bank Sort code 60-17-12 Account number 00844624 BIC: NWBK GB 2L IBAN: GB20NWBK 6017 1200 8446 24 Dr Kirsten Hopkins Tel 0044 117 342 3008 Email: Kirsten.hopkins@UHBristol.nhs.uk

From the IBTA E News February 2013 Neuro-oncology patients and spiritual needs: A survey of nurses who had looked after neuro-oncology patients by University of Nottingham (UK) researchers has found that while there is an awareness of the spiritual needs of patients and their relatives there are questions as to whether or not nurses are the most appropriate professionals to support spiritual care. n

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Expanding the Horizons of Brain Tumor Rehabilitation By Mahlon K. Stewart, PT, DPT and Ilana Unger, MS, OTR/L Kessler Institute for Rehabilitation, West Orange, New Jersey, USA

A

t Kessler Institute for Rehabilitation in West Orange, New Jersey, an ongoing focus is to integrate the latest research into the treatment of our patients with brain injuries. Every once in a while, that cutting edge research leads us to methods that are centuries old; in this case, Tai Chi and the life-affirming companionship between human beings and dogs (“Canine Assisted Therapy”). While these therapies may at first glance seem to be in opposition to a rigorous, hospital-based therapy program, we have found them to be successful adjuncts in helping patients meet or exceed their individual goals.

How we usually work at Kessler An interdisciplinary team approach is the hallmark of the Kessler Institute, pioneered by Dr Henry H Kessler in 1948. The make-up of this team differs depending on each individual’s needs. Following the evaluation process an individualized plan of care is generated for each patient. Traditional therapies, including Physical, Occupational and Speech Therapy, are provided to address changes in physical, behavioral, cognitive, and communication abilities. And recently, we’ve been going a bit further.

Tai Chi and Qigong The research pointing to the psychological and physiological benefits of Tai Chi and Qigong - meditative movement that seeks to nurture the vital energy, or “chi”, within the body from which life and health originates - is well established. In a recent comprehensive review of randomized controlled trials by Jahnke, et. al.1, Tai Chi and Qigong are linked to benefits in cardiac health, bone density, physical function, falls and balance, quality 26

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Above: Facility dog Rex watches a brain tumor patient performing Tai Chi. Also pictured are the article’s authors Dr Mahlon Stewart and Ms Ilana Unger, both therapists at the Kessler Institute in West Orange, New Jersey, USA

of life, self-efficacy, psychological health, and improved immune function. This list is likely incomplete. Currently, there is a paucity of research concerning the use of Tai Chi and Qigong when treating individuals with brain tumors. It is an area ripe for future study. At Kessler, we believe that those living with brain tumors or recovering from recent brain tumor resection have the most to gain from Tai Chi and Qigong. They are each “whole” practices: incorporating mind, body, and breathing,

and thus targeting the physical, behavioral, and cognitive impairments that are commonly associated with such an injury to the brain. Both Tai Chi and Qigong are characterized by slow, dance-like movements in sequence, requiring a focus on posture and movement, breathing, and meditative stilling of the mind. Qigong, the more ancient of the two, is generally more stationary and lends itself to being performed while either standing or sitting, while Tai Chi incorporates multi-step


sequences of body movements. As these practices have been developed over centuries, there are hundreds of styles. However, the underlying principles are the same, and those principles may be easily incorporated by a trained practitioner into a rehabilitation program along with conventional exercise. Depending on the level of ability of each patient (and their desire to participate) patients are selected to be seen either one-on-one or in a group of two patients for 30 minutes, two to three times a week, led by a therapist educated in the principles of Tai Chi and Qigong. We refer to these sessions as “Tai Chi exercise” as they are not Tai Chi classes proper, but instead sessions where Tai Chi and Qigong are adapted for optimal patient participation. The program is universally enjoyed by the patients, who have voiced recent comments such as “I feel like my whole body is activated!” and self-reflective comments such as “My movements are becoming more fluid.” Patients are provided with an illustrated home program for continuation of practice after their stay at Kessler.

Canine Assisted Therapy Facility dogs are highly trained animals that know over 40 commands and work in collaboration with a facilitator to motivate and engage patients. Rex, the facility dog designated for the Brain Injury Unit, was trained and placed with Kessler by Canine Companions for Independence,2 a non-profit provider of assistance dogs. Working with a facility dog is not only a way to enhance therapy, but also provides patients and caregivers the chance to trial an assistance animal for possible use in the future. Canine-assisted therapy can be integrated into co-treatment sessions with the primary Physical Therapist (PT)/ Occupational Therapist (OT), or sessions may occur individually with the facilitator (in this case, an OT). Before working with Rex, a patient must have physician orders. It is of utmost importance that patients do not have pet allergies, open wounds, infection, or compromised immune systems (i.e. patients currently undergoing radiation or chemotherapy).

For those debating whether or not to get a service dog upon discharge from rehabilitation, the program serves as a useful trial run. Patients and caregivers are given the opportunity to handle Rex, give commands, and see how an assistance dog can help in their daily lives (ie: turn off the lights, open the refrigerator, pick up their keys).

Conclusion

Above: A brain tumor patient at the Kessler Institute with facility dog Rex

Rex can help address issues with balance (sitting or standing), visual scanning, communication, fine and gross motor coordination, and attention. Treatment techniques can include brushing and petting Rex while the patient is positioned in sitting on an unstable surface or standing; managing Rex’s collar or vest; playing fetch; walking Rex indoors or outdoors over uneven terrain; and giving commands. Rex can also have a significant impact on overall participation in therapy: for a patient who may be confused or disoriented, or who has just undergone a traumatic experience, Rex’s presence can be comforting, reassuring, and reminiscent of home. This in turn promotes new and emerging movement, communication, and awareness of the environment.

The IBTA has contacts in 109 countries throughout the world to whom it makes available its free monthly electronic news and its free annual magazine, Brain Tumour

Based on our patients’ feedback and our clinical observations, there is strong support for the continued use of these therapy interventions. Our patients frequently report an improved quality of life following engagement in these forms of treatment and exercise. Patients report feeling a sense of regaining control in their lives at a time when that control seems out of their grasp. Patients use words such as “accomplishment”, “joy”, and “self-worth” to describe their responses to participation in these programs. In the words of one recent patient, “I haven’t felt this happy since before my diagnosis.” n

References: 1 Jahnke R, Larkey L, Rogers C, Etnier J, Lin F: A comprehensive review of health benefits of qigong and tai chi. Am J Heath Promot; 24(6):e1-e125. (available free online at http://www.ncbi.nlm.nih. gov/pmc/articles/PMC3085832/) 2 Canine Companion for Independence website: http://www.cci.org

Dr Stewart may be reached via e-mail at mkstewart@kessler-rehab.com; and Ms Unger at iunger@kessler-rehab.com

From the IBTA E News November 2012 Court action - delayed diagnosis: A 27-year-old Irish man was awarded an initial payment of €2.5m (about USD $3.2m) over an alleged delay in diagnosing his germ cell brain tumour which left him severely disabled, and because of a decision by doctors to proceed with surgery rather than chemotherapy or radiotherapy n

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EORTC Brain Metastases Platform By Dr Sandrine Marreaud, Professor Matthias Preusser and Professor Wolfgang Wick for the EORTC Brain Metastasis Platform

O

ver the past three decades, the treatment of several solid tumor entities and systemic disease outside the central nervous system has markedly improved. However control of central nervous system, mainly brain, metastases remains challenging. Despite multimodal treatments, development of brain metastases occurs not only in patients with already-distant spread at diagnosis, but also in cancers that may be treated with a curative intent. The occurrence of brain metastases then often determines the prognosis and the quality of life of affected patients. Given this baseline, new strategies not only to combat but also to prevent brain metastases have to be explored. These strategies necessarily need to take into account not only the biological differences of different tumor types, but also the specifics of a tumor in an individual patient, the existing therapies as well as health-related quality of life and neurocognitive functioning issues. The common challenges across all tumor types are the central role of the brain functions; the existence of a bloodbrain barrier at least for micrometastases; and the immune privilege of the brain as well as the specific vulnerability of the white matter of the brain to any form of toxic interventions. In order to optimally develop and conduct projects focusing on brain metastases, the European Organisation for Research and Treatment of Cancer (EORTC) launched the development of a Brain Metastases platform in August 2012. This research platform brings together the multidisciplinary approach that is needed to develop brain metastases projects across several tumor types such as lung, breast and melanoma. It is expected that this cross-sectional platform stimulates innovative and insightful research in a collaborative environment 28

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Above: EORTC Brain Metastases Platform (BMP). Participants at the first meeting, January 18th, 2013 in Brussels. Vassilis Golfinopoulos (Vice Medical Director and Research Physician, Brain Tumor Group [BTG], EORTC), Wolfgang Wick (Chair BMP and BTG), Martin Bendszus (Imaging and Brain Tumor Group), Matthias Preusser (Vice-Chair BMP), Jaap Reijneveld (BTG and Quality of Life Unit), Martin Klein (BTG), Michal Jarzab (Breast Tumor Group), Philippe Metellus (BTG), Damien Weber (BTG and Radiotherapy Oncology Group), Laurence Collette (Associate Head, EORTC Biostatistics), Lotte Moser (Radiotherapy Oncology Group, Breast Cancer Group), Dieta Brandsma (BTG), Martin van den Bent (BTG, Chair Translational Research Division), Jörg-Christian Tonn (BTG), Sandrine Marreaud (EORTC Coordinator BMP), Anne-Sophie Govaerts (EORTC Project Development). Via Webex or early departure: Sanjay Popat (Lung Cancer Group), Frédéric Dhermain (BTG), Mary O’Brian (Lung Cancer Group)

in order to improve the standard of care and methodology of clinical research. The platform aims to generate academic projects with basic, translational and outcome research as well as clinical trials involving organ tumor, brain, radiotherapy, imaging and pathobiology specialists. There will also be structured interaction with industry partners to foster development and put a focus on this area of particular need. n

The 2013 International Brain Tumour Awareness Week is from 27th October to 2nd November.

From the IBTA E News February 2013 Old drugs, new tricks: In a study that confirms the usefulness of revisiting previously licensed drugs, Mayo Clinic researchers have found that an oral rinse of the antidepressant doxepin significantly eased pain associated with oral mucositis in patients receiving radiation therapy for cancers of the head and neck. Meanwhile, a UK laboratory study of GBM cells has found that a drug used for many years in alcohol addiction treatment (disulfiram) and which crosses the blood brain barrier, might be relevant as a therapy for GBM. The UK research was funded by The Brain Tumour Charity. n


In the U.S. alone,

700,000 people are living with a brain tumor diagnosis.

The Brain Tumour Charity and Brain Tumour UK have merged.

There are 120 different types of brain tumors. This year, 14,000 people will die from a brain tumor. More than 500 people will be diagnosed today.

Together we will be a stronger force, working with you to improve outcomes for everyone affected by a brain tumour, now and in the future. thebraintumourcharity.org/merger

There is no one answer. There is one leading resource.

Saving lives through research, information, awareness & policy

thebraintumourcharity.org Learn more at www.abta.org or call 800-886-ABTA (2282).

+44 (0)1252 749990 ŠThe Brain Tumour Charity Registered Charity no. 1150054 (England and Wales) SC042096 (Scotland)

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Online discussion group for the Novocure TTF system AL MUSELLA (USA) hosts the Virtualtrials website, regarded by many as the most comprehensive web resource for brain tumour treatment information in the English language (www.virtualtrials.com). He is also the “father” of an email discussion group on the NovoTTF 100A System for brain tumour patients and caregivers. IBTA: When and why did you commence the email group for brain tumor patients and caregivers using the Novocure NovoTTF 100A System? AM: I started the ”brain-novocure” online support group on 3 Jan 2010 as a way for people in the Novocure trial to discuss their experiences with the device. It is a unique treatment and there really was no other place for users to talk to other users since there were so few of them spread out across the world. The group is doing great. We keep it on topic. Most members are also in our “braintumor-treatments” online group so questions about general brain tumor problems are asked there. IBTA: How do you believe the Novocure group has benefited its members? AM: Technical questions pop up and others help them through it - such as how to go through airport security with a device that has wires and batteries or how to manage the recharging of the device’s batteries in your car by getting an invertor that plugs into the cigarette lighter, or how to deal with irritation under the electrodes. One member found a perfect luggage carrier to use to move the device around with and shared it with the group. IBTA: What else do the members discuss? AM: There is talk about [USA health] insurance issues - luckily costs haven’t been a problem yet. They also talk about the ups and downs of using the device - it is a hassle, but no nausea or major side effects. We hear about how the tumors are 30

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to an online forum on our website (www. virtualtrials.com) with separate forums for many tumor types and treatment types. As email became popular, we moved to online email based groups - and I set up separate groups for each of the forums we had on our website. Over time, some groups withered away and I closed them and created new groups as needed.

Above: The Novocure TTF device (posed by a model). Photo courtesy of Novocure.

responding. It doesn’t help everyone, but for some people it is helping a lot. We found that it takes time to show improvement. Many doctors took the patients off the device too quickly at first. We had people who had growth on the first scan after starting the device - who were told to come off of it but insisted on continuing, and in some it did turn around and start working. We now have some people who are combining it with other treatments and we are watching to see what happens. IBTA: You have been involved with online discussion groups for a while. When did you first start? AM: I have created a few online groups. I started the first online support group dedicated to brain tumor patients: “The Compuserve Brain Tumor Forum” back in March of 1992 on the Compuserve Cancer Forum when my sister-in-law was diagnosed with a brain tumor. There were no online resources for brain tumors at the time so I set it up. As the web developed, we moved from Compuserve

IBTA: You did something similar when temozolomide (Temodar/Temodal) was first introduced? AM: When the big Temodar trial started, I added a new group focused on that particular trial, to see how it was doing, as well as to let people in the trial interact with each other and help each other. That group became so popular that our glioblastoma multiforme (GBM) group withered away and I combined them into the “brain-temodar” group. That became our major online support group for many years even after Temodar was approved. As the group grew in size it was hard to keep it focused so we split off several other groups where members could discuss nonmedical aspects of having a brain tumor, such as the “brain-finance”, “bt-faith”, “braintumor-community” and others. This allowed the “brain-temodar” group to stay focused on medical discussions only. Then as new treatments came into use, the focus of the “brain-temodar” group was changed to include all treatments for brain tumors, so we changed the name to “braintumortreatments” and today it is (in my biased opinion) the best group for the discussion of brain tumor treatments. As the Novocure device becomes more commonly used, it will make sense to combine that group back into “braintumortreatments” as the information will become relevant to more people. But for now, having a small, tight group dedicated to this one topic is working out great! n


Therapy dog comforts USA girl with brain tumor By Cynthia Flash This story and photo first appeared in the Federal Way Mirror newspaper in the USA on 2 July 2012 and has been reproduced with permission of the author and Providence Hospice, Seattle. To learn more about Providence Hospice of Seattle’s therapy dog program, or to volunteer to be part of the program, go to http://www2.providence.org Cynthia Flash can be contacted at cynthia@flashmediaservices.com or (425) 603-9520.

FOR a girl who is crazy passionate about cats, having a dog come to visit her house is, well, a bit different. But then again, Dresden, a yellow lab, isn’t just a regular dog. She’s a highly trained therapy dog who spends her days visiting hospice patients - old and young and making them feel better. One of Dresden’s regulars is eight-yearold Kaylie Bergen, a cat fanatic whose family has fostered dozens of cats and whose house is decorated with Kaylie’s feline passion. But Kaylie is willing to put all that aside when Dresden comes to visit. “Dresden’s leash helps me,” Kaylie said during a recent visit as Dresden pulled away while Kaylie held on to the leash and pulled herself up from laying on the floor to a sitting position. “Dresden’s smiling!” Dresden started visiting Kaylie about two years ago, when the Federal Way girl joined Providence Hospice of Seattle’s pediatric program. Kaylie was diagnosed with a malignant tumor in the brainstem at age five and has been living with it ever since. Hospice nurses, social workers and physical therapists provide the human care Kaylie needs. Dresden provides the canine care. “We love Dresden,” said Kaylie’s mother, Christy Bergen. “To have a trained dog come to bring the ball back to you was amazing to Kaylie. To snuggle, give kisses, do whatever Kaylie says, she loves the visits. Dresden is a highlight of the day.” Therapy dog handlers go through a training program offered by Pet Partners to learn how to train their animals to be therapy dogs. The animals are trained not only to follow the directions of the patients they visit and offer lots of love and affection, but also to stay calm in the face of otherwise enticing distractions - such as cats.

Above: Dresden, a yellow labrador, visits eight-year-old Kaylie Bergen of Federal Way, Washington, USA

That’s particularly challenging in a house like Kaylie’s, which always has several cats prowling around. “Dresden loves our cats too, as much as Kaylie does,” Christy said. “She gets excited and looks at them.” But she doesn’t chase. She’s been highly trained not to. “Because of Dresden’s training she’s able to go and be with Kaylie in a way that’s not overwhelming for Kaylie,” said Maureen Horgan, Providence Hospice of Seattle social worker and clinical manager of the Stepping Stones program for pediatric hospice patients. During visits from dogs like Dresden, patients often pet, hug, or talk to the dog, throw a ball for the dog to fetch, give commands to the dog to “sit,” “lie down” and “get,” which can be especially empowering for younger patients and family members. Sometimes patients simply sit or lie quietly with the dog at their feet or by their side. Providence Hospice of Seattle currently has three therapy dogs like Dresden

working with patients. The agency, which helps adults and children at the end of their lives, is always looking for more. “Studies have shown that interacting with animals can have significant physiological and psychological benefits for people,” Horgan said. “The presence of a friendly companion animal can help to lower blood pressure, reduce feelings of anxiety and isolation and foster a greater sense of well-being. In fact, simply petting an animal can trigger the release of beneficial hormones that enhance mood.” Kaylie and her family have seen these benefits. Even Kaylie’s younger brother enjoys playing with Dresden when she visits. “Dresden is such a sweet dog. It definitely lifts Kaylie’s spirits to know she’s coming, to plan for when she’s coming, to do something special for her,” Christy said. “Animals are so good at that. When (Kaylie) wasn’t feeling good, we got Dresden on the couch and Kaylie pet her. Whatever she needs, Dresden does it.” n Brain Tumour

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I remember the light and hope my mother filled our home with...even when our hearts were filled with sorrow and despair By Elizabeth Pool

M

y name is Elizabeth Pool. I am a 17-year-old senior at Shadow Mountain High School in Phoenix, Arizona (USA). I enjoy playing badminton competitively on my school team and was the captain in my junior and senior years. I am a member of the National Honor Society, Spanish Honor Society, Society of Women Scholars, and a representative of the Athletic Council at Shadow Mountain. I am also the President of the Students Supporting Brain Tumor Research (SSBTR) Club. I live with my dad, Bill, and have three siblings: Aaron (24), who is a recent graduate from West Point Military Academy; Laurie Beth (22), who also recently graduated from the University of Arizona Nursing School, and Rachel (19), a freshman at Northern Arizona University (NAU).

My mother was diagnosed with brain cancer in 2008 The main reason I became involved with SSBTR was for my mother, who passed away in December 2011 after her threeand-a-half year battle with brain cancer. Taking part in SSBTR is my tribute to her and to anyone else who has suffered from brain cancer, because no one should have to deal with what my family has gone through. I am very passionate about SSBTR and am eager to start a group at NAU where I plan to attend college in the upcoming school year. My mother, Nancy Pool, was diagnosed with a grade IV glioblastoma in the left temporal lobe in 2008. Through two surgeries and multiple rounds of chemotherapy and radiation at Barrow Neurological Institute in Phoenix, my mom’s spirit remained strong. She 32

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Above: The author Elizabeth as a baby with her mother, Nancy Pool. Elizabeth said: “This photograph always touches me deeply as it makes me feel so much better to see how my mother loved me as I lay all curled up in her arms.”

continued, to the best of her ability, her hobbies of sewing, playing the violin, hiking, and doing crossword puzzles. She persevered through every treatment, medication side effect, functional loss, and worsening MRI, her smile never fading. One day during breakfast in the last few months of her life, she asked my sister, who was in nursing school at the time, what it would be like to die. She was not

asking because she was scared or worried, she was asking because she was curious. And that’s just the type of person she was. She was realistic and reasonable, accepting the situation for what it was, and making the best of the time she had left.

Involvement in “Students Supporting Brain Tumor Research” In 2009, shortly after my mother’s diagnosis,


Right: The Pools gather together shortly after Elizabeth’s mother was diagnosed with a brain tumor. “Spending quality time together as a family was so very important during our brain tumor journey,” said Elizabeth

Above: Elizabeth (left) and her mother Nancy (right) in the summer of 2009 at the Phoenix Botanical Gardens in Arizona, USA. Nancy loved nature and plants, so visiting the gardens was very special for her, particularly when she was going through

our school, and are constantly trying to raise awareness about brain cancer. The enthusiasm I see from my peers raises my hopes and is another stride forward towards finding a cure for this horrific disease. Reaching out to Key Club, National Honor Society, and non-members of the club at school to look for volunteers was encouraging - many kids want to donate their time and help the foundation. SSBTR has a new meaning to my high school, my friends, and especially me. After working hard, week by week, with the dedicated volunteers, I have never had more motivation to do the absolute best job I can, and to always give 100 percent. This organization has touched my heart forever, right next to my mother.

Above: Elizabeth and her siblings, March 2008, at West Point, the United States Military Academy in the town of Highlands in Orange County, New York. Left to right: Rachel, Elizabeth, Laurie Beth, and brother Aaron

chemotherapy and radiation for her brain tumor

Remembering Mom my family and I first became active members in SSBTR. That first year, we gathered a group of about 20 friends and family to walk with my mom in her newlybegun fight against brain cancer. Nearly four years later, we are expecting close to 200 members of our community to walk alongside us in memory of my mother. The SSBTR Walk-A-Thons have been a wonderful way to spend time with my friends and family as each and every one of them shows their support by walking and wearing their pink “Team Nancy” shirt, loud and proud. Between all the food, games, music, and entertainers, the excitement is unforgettable.

Looking back at my childhood and adolescence, I can barely remember my mom before she was sick. But I am lucky, because this fact does not bother me. When I look back, I remember her laughter, as though it were ringing in my ears today. I remember her child-like demeanor as we played games together or walked hand-in-hand. I remember her kissing me goodnight, telling me she loved me. I remember the light and hope she filled our home with, even when our hearts were filled with sorrow and despair.

With each passing day, these memories were imprinted in my brain and in my heart. I feel a wonderful sense of accomplishment in taking steps towards curing the disease that plagued the lives of my family for years. Each year when I walk around the track at the Students Supporting Brain Tumor Research Walk-A-Thon, I imagine my mom walking beside me, telling me how proud she is of what we have accomplished. n For further information on Students Supporting Brain Tumor Research, see http://www.ssbtr.org/

The SSBTR Club is established It occurred to me last year after the Walk-AThon, that I would like nothing more than to be a part of the team who helps organize the SSBTR Walk-A-Thon each year. I was accepted as a Co-Chair and took on the job of Secretary, excited to begin planning and organizing the 2013 event. If it weren’t for the encouragement from my friends, I would not have created an SSBTR Club at school, which has now grown to over 60 members. Through the overwhelming success of this club, we have organized fundraisers at numerous restaurants, held individual fundraisers at

Above: “Team Nancy Pool” at the SSBTR Walk-A-Thon in 2012 in Phoenix, Arizona

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Potential of Antipsychotics and Statins in the Treatment of Glioblastoma By Baghya Nirmani Wijenayake and Louise Lutze-Mann School of Biotechnology and Biomolecular Sciences at the University of NSW in Sydney, Australia

THE idea came about some years ago during a convivial dinner with a good glass of red wine that we were enjoying with a colleague who researches schizophrenia. She mentioned the intriguing fact that patients with schizophrenia appear to have a lower incidence of some cancers compared to the general population. Further research involving analysis of a broad range of population studies confirmed this unlikely correlation - people who are suffering from schizophrenia are less likely to contract certain cancers. This finding is even more intriguing when lifestyle factors such as smoking are taken into consideration. Addiction to nicotine is common in people with schizophrenia smoking incidence is three times higher in these patients than the general population. Surprisingly, however, lung cancer incidence is significantly reduced in schizophrenics.

Connection with schizophrenia? The question, of course, is why? What is causing this effect? Could it have something to do with the genetic make up of a person suffering from schizophrenia? Perhaps the genetic changes that lead to schizophrenia also provide protection against cancer; or maybe it is an external factor common to schizophrenic patients. One such factor is the regular usage of antipsychotic drugs that these patients take for many years. This led us to investigate the exciting hypothesis that antipsychotic drugs may have the potential to act as chemotherapeutic agents against certain cancers. We initially trialed a number of these drugs against a range of cancer cells breast, leukaemia, neuroblastoma and, of course, lung. We were elated to find that the antipsychotic drugs were successful in killing these cancer cells. 34

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Above: The Lutze-Mann Whitaker lab group. Dr Lutze-Mann is fourth from the left. Baghya Nirmani Wijenayake is second from the right

Antipsychotics and glioblastoma? Our focus then shifted to the possibility that antipsychotics might be able to treat glioblastoma. This was not only because of the poor prognosis for this cancer type nor the resistance that the tumour develops all too readily against Temodal (temozolomide) but because we knew that many drugs are not effective because they are unable to cross the brain’s protective blood-brain barrier. We knew that antipsychotics would be able to cross the blood-brain barrier since they are effective in treating schizophrenia. We have now tested the ability of a range of antipsychotic drugs to kill glioblastoma cells in the lab. We found that all those tested possess some level of anti-tumour activity. We then investigated the mechanism of action of these drugs and found the intriguing result that they may interfere with cholesterol metabolism in cells. Cells need cholesterol when they are dividing, which is what cancer cells do far too frequently.

Statins might also be effective We decided that if the antipsychotic drugs

kill cells by interfering with cholesterol pathways then maybe statins - commonly used cholesterol-lowering drugs - would also be effective, which indeed they are. Not all antipsychotics are ideal because some have quite severe side effects. However statins have a much more favourable side effect profile and are commonly prescribed drugs in both Australia and America. We have now commenced animal trials utilsing an antipsychotic that has an acceptable side-effect profile, alone and in combination with a statin that can cross the blood-brain barrier and we are pleased to report that these initial trials are promising. Given the extensive time and large investment of money that is required to bring a new drug to market, we feel that “repurposing� these drugs for the treatment of glioblastoma is very promising since it should ensure that they will be available far sooner and with a far better understanding of their effects in patients. n Dr Lutze-Mann may be contacted at l.lutze-mann@unsw.edu.au


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Caring for patients as unique individuals Professor Michael Weller is Chairman of the Department of Neurology at the University Hospital Zurich in Switzerland. An award-winning cancer researcher who has authored over 480 original articles, he specialises in the study of glioblastoma. I spent my childhood with my parents, two sisters and a brother in Cologne, Germany but no one in my family had a medical or medical research background. However, a genuine interest in philosophy and the brain-mind interface, together with glioblastoma in the father of a close school friend, probably attracted me to psychiatry first, then neurology, and ultimately neurological oncology. Also, looking for a challenge both in patient care and experimental research may have led me to finally focus on glioblastoma. Specifically, why the body’s immune system fails to recognize tumor growth in the brain as a threat has always been, and still is, a challenge and mystery to me.

The challenges of brain tumor management Every patient is unique and so is his or her way of coping with the disease and the suffering. The longer I care for an individual patient and his caregivers, the more I get involved, and the more it hurts to finally let them go. The personal caring for a patient cannot be substituted by email counseling via long distances with numerous email attachments because there is no standard approach to the individual challenges of brain tumor management. Further, from a medical student`s point of view searching for a role in medicine, nobody is forced to join the neuro-oncology community of health care professionals; there are so many other options. I believe that health professionals unable to cope with the challenges of working with brain tumor patients and their families are unlikely to choose this field as their personal mission. 36

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Above: Professor Michael Weller is based at the University Hospital Zurich in Switzerland

In fact, there is often enough reason to relax, enjoy or even celebrate, if the MRI provides the good response in a brain tumour patient for which we hope. Of course, there are also certain days in my life where it is very difficult to deal with the truth that all efforts at saving life may eventually fail. Honestly, however, dealing with administration, bureaucracy, and increasing difficulties in funding our research provides probably overall more emotional stress to me than the daily work with patients and relatives which I always experience as hopefully meaningful to both sides.

Potential for the future If I did not hope for significant

breakthroughs with promising brain tumour therapies, it would be very difficult to motivate my team to invest so much time and effort in the development of novel treatments. Molecular profiling refining diagnostic assessment and providing novel targets for therapy has made tremendous progress in some areas of neuro-oncology and is just now starting to change clinical practice. Although maybe somewhat irrational, I still trust that immunologicallybased therapies including vaccination hold the greatest potential within a decade`s perspective. Yet, novel therapies are often offered to desperate patients and their families without sound scientific rationale. It is also our duty and responsibility to ensure that patients are protected from therapeutic options that are expensive but make no sense. Rather, we must ensure their access to the treatments that are proven effective or at least most promising.

Family, travel and opera My current position in Zurich does not provide a lot of opportunities for relaxation and hobbies, but I do like my professional life - and the travel that goes along with it. I have not played the piano for decades, although I enjoyed it a lot back then. I was a passionate soccer player until the age of 16. I love Italian opera, notably Puccini. Overall, my family now assumes the leading role and their hobbies become my hobbies. n

From the IBTA E News February 2013 Predicting brain tumours: Northwestern Medicine (USA) researchers have developed a new method for predicting and monitoring an individual patient’s brain tumor growth. The method, which the researchers hope to offer as an iPad app or upload to a website, uses a personalized patient-specific approach that accounts for tumor features such as 3-dimensional shape, density and growth rate. It could enable rapid assessment of whether or not a therapy is working. n


Italia - Glioblastoma Multiforme - cancro al cervello ALL those in the brain tumour community know that the words “glioblastoma multiforme” mean something that is monstrous, devastating and deadly. To help patients diagnosed with this disease, an innovative Facebook community known as “Italia Glioblastoma Multiforme - cancro al cervello” (the words “cancro al cervello” mean “brain cancer”) was founded by Simone Silenzi in January 2009. It is now entering its fifth year. Before the group was established, newly diagnosed GBM patients and their families had to start from scratch with their own research on the Internet. This searching often left them with a sense of frustration and emptiness. Simone Silenzi, who is based in Monte San Giusto (Italy) and lost his mother Stella to a GBM in 2010 has identified the problems that affect communication between people with a glioblastoma, their family and friends, and the scientific community. The on-line group (which is conducted in Italian) has become a meeting place for all those who wish to be involved in the war against glioblastoma. It enables its participants to be updated about the best methods to assist GBM patients and their families. Laura D’Avanzo, a spokesperson for the group from Sardinia said: “Here in

our online community we have a model of empowerment for all those who are involved with it.” The group has come up with the suggestion that perhaps doctors and healthcare professionals who assist with updating the scientific content of the Facebook pages could one day be given professional credits for their work in this area. The group has attracted interest in the Italian media and in some books dealing with communication and dissemination in the healthcare field. There have been meetings with the President of the Chamber of Deputies of the Italian Parliament, the Italian Guarantor of Privacy and the Italian Minister of Health. Contact has also been made with the heads of the Department of the Ministry of Health and some of the most active health associations in Italy. Simone Silenzi told Brain Tumour magazine: “After these meetings the group now proposes the establishment of an Italian ‘National Observatory on

Glioblastoma’. This would serve as a coordinating crisis unit, similar to agencies that deal with earthquakes and wars, so that the war on glioblastoma could be fought more concretely and effectively.” He added: “As regards the situation in Italy, a concrete change can be brought about only if the voices of patients, families and relevant associations can be considered as a fundamental partner in writing laws and guidelines, and helping to avoid bureaucratic hierarchies.” Simone Silenzi said that he is willing to offer his services in coordinating the work of this Italian ‘National Observatory on Glioblastoma’ and also sees potential for it on a European level. The web address of the group is https://www.facebook.com/groups/ italia.glioblastoma.multiforme/ n For further information please contact: iosim@hotmail.it

Above: An image from the online “Italia - Glioblastoma Multiforme - cancro al cervello” Facebook group

There are at least

From the IBTA E News February 2013

120 different

Paediatric patients: A review in the Lancet Oncology journal advises using molecularly targeted therapies with pediatric cancer patients only in the context of a clinical trial. “The growth of cancer cells isn’t that different than a growth of a 7-pound baby into a 210-pound teenage linebacker. Now, you shut down those growth pathways in an adult and it might not be a big deal, but you shut down those same pathways at a critical time in childhood development and you can have real problems”, says Dr Lia Gore from the University of Colorado Cancer Center. n

types of brain tumour.

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Clinical Art Therapy and Cancer: A Personal Story By Jody Thomson, Art Therapist & Chair of The Art Therapy Cottage Inc Sydney, Australia

IN February 2013 it was 14 years since my husband died from a glioblastoma multiforme (GBM). He was 42 years old, and our children were then five and eight. We spent the year between his diagnosis and death in a bubble of denial, inadequately informed and largely ignorant of the support available. His 7cm tumour was in the left occipital lobe, and discovered by MRI after months of “starry vision” and incredible headaches. He underwent a cranial biopsy and six weeks of radiotherapy, and steadily declined for the last six months of his life. He stayed at home, in my care, until a frightening grand mal seizure three days before he died made hospital a necessity. In life and death, his courage, determination and generous love were phenomenal. I was in awe of this person who believed “I will win, I will beat this”, in spite of the statistics, in spite of the deficits, through loss after loss after loss. This was his gift to me - this belief, this bravery, this strength and this love. And so I have made it my life’s work - to offer myself, my experience, and my training, in living with, through and on from cancer. I feel very privileged to work in this area. The people I meet and work alongside are invariably genuine, grateful and often vulnerable. I view life more like they do now, with new appreciation, less assuredness and with much more wonder.

Support groups initiated After completing my Master of Art Therapy degree (University of Western Sydney), I began working as a Clinical Art Therapist in 2010, designing and facilitating support groups for the Cancer Council of New South Wales (NSW), Australia. The groups 38

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of others making similar journeys. We laugh, cry, share our stories, creativity and our wisdom. People are free to make or do anything they choose, and it is my job to facilitate technical skills, inspiration and confidentiality and to foster empathy. They have choice and control - which are often so lacking in their lives - over what they make and what they share. The group is free, yet a donation is appreciated towards lunch and art materials.

Helps redress lack of support, and isolation Above: Art therapist Jody Thomson

are short term, heterogeneous and run biannually in different locations. They offer a unique kind of support for people with any kind of diagnosis, and at any stage of their journey. I also facilitate similar groups throughout the year for the Blue Mountains Cancer Help organisation in Katoomba, and for the Sydney Adventist Hospital in Wahroonga (NSW). I established the Art Therapy Cottage in Kenthurst, NSW in 2011. This quaint old community hall is home to the “Cancer + Art” project, a weekly art-as-therapy support group for adults who have been affected by any kind of cancer. The project offers something quite unique, and utilises all my experience and training in group therapy, creative art and art therapy in a clinical setting. It is in perfect symmetry with more traditional psychoeducational, verbal support groups. Up to fifteen participants come every week, and are provided with a huge variety of art materials and suggested activities, a nutritious lunch, and the company

Participants come from all over the area, referred by friends, family, general practitioners and hospital-based support groups. It is unpaid community service work for me. It helps me redress the lack of support and isolation I felt all those years ago. Now that The Art Therapy Cottage is an incorporated, tax deductible charity, it runs on donations from local business and inspired individuals. To date, the “Cancer + Art” project has raised AUD $5,300, and will require further funding or grants to expand and continue past 2013. This is ‘grass-roots’ support work which must continue. I feel that this is just the beginning, and have been incredibly moved and rewarded by the overwhelmingly positive response to work that I feel so passionately about.

My belief is that creativity, in any form, is life-affirming Of all the expressive therapies (art, music, drama and dance), art therapy can encapsulate feelings and emotions in a tangible way. It is physical and tactile. It is not about “art”, or being able to draw or paint; it’s about what happens at a


deeper level, when we make images from our hearts rather than our heads. It’s less about the product than the process. Making images stimulates the imagination, can bypass our verbal defences, and offers distraction and pain management. Making images and reflecting on them within a therapeutic relationship can be a powerful psychotherapeutic modality in which people feel understood, accepted and acknowledged.

A challenge every day The work challenges me every day, particularly when I have a brain tumour patient, a carer, or the group has to work through the death of someone they have worked alongside and have become friendly with. There is so much wisdom and knowledge shared in these groups such cohesion, affection and empathy. I am so grateful to have the opportunity to make a difference to people’s lives. A cancer diagnosis changes lives

Above: Some of the people who are involved in Jody Thomson’s “Cancer + Art” workshops

immediately and irrevocably. Sometimes there are no words to express or explain the shock, fear, anger, loss and frustration that this can bring. In a very tangible way, art therapy, and art-as-therapy addresses the search for meaning and purpose in

life in the face of an unexpected and potentially overwhelming threat posed by illness. n The author can be contacted at jody.thomson@tpg.com.au

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Brain tumors in Denmark: the work of HjernetumorForeningen Ex-caregiver Karen Risgaard lives in Aalborg, Denmark. Her husband was diagnosed with a brain tumour in 2010 and Karen now assists with the Danish brain tumour patient and caregiver organization, HjernetumorForeningen. IBTA: When did you become involved with the Danish brain tumour patient and caregiver organization, HjernetumorForeningen? KR: In April 2011 doctors, nurses and scientists involved in the Danish brain tumor community promoted a conference in Copenhagen together with the medical company Roche. The goal of the conference was to focus on brain tumors and their associated treatment, as it was at that time in Denmark. It was also the intention to find out if there was a possibility to create a brain tumor association in Denmark which could be run by some of the participants in the conference. IBTA: What led to your involvement with the Danish brain tumour patient organisation? KR: My husband had been diagnosed with a brain tumor in March 2010, and both he and I came to the hospital for his treatment with radiation therapy, chemotherapy and, as part of a trial using Avastin. We had come to know the doctors and nurses quite well, as it is when you participate in a trial and when you have to be checked regularly. Mats Holmberg, a doctor, was part of the planning group for the conference, and he asked my husband and me to speak about the problems and challenges you have in a marriage, when one person gets seriously ill and is going to die. My husband and I were both former educators and took the invitation as a great opportunity to tell other people about the challenges for both the patient and the relative - and to give a presentation together 40

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Above: Denis Strangman, far left (IBTA Chair) meets in Copenhagen, Denmark during 2012 with Hallstein Gravrak, second from left, of the Norwegian Brain Tumour Association (Hjernesvulstforeningen), Bitten Naested, third from left, of the Danish Brain Tumour Association (HjernetumorForeningen) and Karen Risgaard, far right, also from the Danish organisation. IBTA Co-Director, Kathy Oliver, is seated between Bitten and Karen

for the first and last time in our careers. In September 2011, five months after the first meeting in Copenhagen, 11 people met at a central location in Denmark, and we established the “Brain Tumor Network”, with a little working group and a contact person in all five regions in Denmark. At that time there were two people in particular - Bitten Næsted Hansen and Aksel Balle - who had done a great job networking with doctors, relatives and patients and they made it possible to meet. My own involvement in planning this weekend was very little, as my husband became very ill late in April 2011 and died in July of that year. IBTA: What is your personal and professional background? KR: I am a physiotherapist, and I have worked with patients with neurological diseases most of my professional career. I have a Masters in Learning Processes and

worked as a lecturer in physiotherapy for many years. In 2008 I changed from education to leadership and became Principal for a center for rehabilitation for brain damaged people (now, unfortunately disbanded). As I said, my husband died in July 2011. In the next six months after that I didn’t have a job, and that left me with some time to work for the Brain Tumor Network. It was and still is meaningful for me to work for the association, as I am both a professional worker and a relative. I both give and get help, support and knowledge. While my husband was still in treatment, I participated in a group for relatives of patients at the hospital. It was very good therapy for me just to talk with others in the same situation. I wanted to give the same opportunity to other people. I knew and felt the importance of such a group, both for mental and physical well-being.


Above: Karen Risgaard (left) and Bitten Naested (right), pictured at a meeting of HjernetumorForeningen, the Danish Brain Tumour Association, in 2012

IBTA: What role do you undertake in the organisation? KR: In the beginning, when we were still a Network I took care of the money - and that was an easy job, as we didn’t have very much money! We received some financial help from the Danish Cancer Society. In April 2012 when we became a “real” organization, I took on a new role as Secretary, which means that I have to write official letters, take notes from our meetings, make plans and schedules etc. Besides that, I am still the contact person for the northern part of Jutland, an area of Denmark. I run a support group for relatives, where we meet once a month. I am leading the group, but am not coaching or giving therapy. We support each other, and after one-and-a-half years we are a mixture of members who have lost loved ones, and members who still fight with the tumor and its consequences. IBTA: What do you envisage for the future of HjernetumorForeningen? KR: We have achieved, in a short time, more than 100 members, which tells me that there had been a need for the association and I think the need will be even bigger in the future, as the health system is getting more and more efficient. The staff around patients don´t have time to talk, and I know you listen when you are ready, you ask questions when you need an answer, but sometimes you don´t know what you need to know. You can get knowledge from other

patients or relatives who already have experienced what you are going through right now. This means that there will be a need for Network groups, as we call them, all over the country in the future. There is a big need for volunteers in the health system. The staff has been cut down to an absolute minimum and that creates a demand for other helpers. I think we could do more for patients suffering from other types of tumors apart from glioblastoma multiforme. They have other needs from an association, and hopefully we will be able to do that in the near future, but that still requires more active members who are willing to give some time. We read about trials and treatments in the UK, Germany and the USA and our patients want those trials and want those treatments, but often we have to make our own trials in Denmark before we can give the same treatment. That is very frustrating for our members and I hope that the association can be the connection between the patients and the professionals. We have to collect knowledge from both sides and hopefully help make the perfect match. So far we have a good level of communication with doctors from the main hospitals, and we can succeed in that because we are such a small country. But we are still not a well-known association. Patients call for help and we do not have

enough active members to answer all of their demands. I hope this challenge will be solved, but it takes time and resources to be a good association. IBTA: How do you cope with the challenges that you encounter in your work for HjernetumorForeningen? KR: Actually I would like to do much more than I do, but I can’t find the resources right now. I have a new full time job. I have the sole responsibility to look after my house, keep the garden etc. I have a daughter with whom I want to spend some time. But because I am working as a physiotherapist in an acute ward for patients with brain diseases, including brain tumors, I meet patients and relatives through my work. My colleagues know about my interest, and we always support and supervise each other when necessary. I have a good relationship with supervisors in the Danish Cancer Society in my home city, and I can get coaching from them when I need it. I also talk to the other members of HjernetumorForeningen about these challenges when we meet. Again - because we live in a small country and we are a new association - we know each other well, and know where to call for help. I am sure we will be known by more people in the future. n

Our walk is always like a homecoming with new friends and old THE Michael Quinlan Brain Tumor Foundation (MQBTF) and The Brain Injury Alliance of Kentucky (BIAK) merged in October, 2010 - BIAK being 25 years-old and MQBTF ten. 2012 saw their second awareness raising walk together. Cindy Rosser, Family Outreach Coordinator, said: “We had 300-plus walkers on a beautiful, cool and sunny Kentucky spring morning. Our walk is always like a homecoming: new friends and old friends getting together

to share in a celebration of honor for survivors and cherished memory of loved ones passed. We shared a happy time chatting with friends on our 1.25 mile walk and “getting down” to the tunes from Jessup and the Get Downs. Walkers were rewarded with silver beads (left over from the 25th BIAK Anniversary and Silver Screen Brain Ball in November, 2011) and Papa John’s pizza. The event closed with an awards ceremony and more groovy music to move the stragglers and clean-up crew. It truly was a great day!” n

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Tackling challenges for brain tumour patients and their doctors in developing countries Dr Katrin Scheinemann, [MD PHD (equivalent) FHM (CH)] is an Assistant Professor of Paediatrics at McMaster Children’s Hospital in Hamilton, Ontario within the Division of Hematology/ Oncology and the Chair of the multidisciplinary neurooncology program. She led the discussion at the international affairs session at the International Symposium on Pediatric Neuro-Oncology (ISPNO) Conference held in Toronto, Canada, in 2012 (see http://www. ispno2012.com/). The IBTA later invited her to respond to some specific questions about care for brain tumour patients in developing countries and the particular challenges in these nations. IBTA: What is your personal and professional background? KS: I was born in Germany and completed my medical degree and doctoral thesis there, followed by pediatric residency in Switzerland. In 2006 I started my pediatric hematology/oncology fellowship at the Hospital for Sick Children in Toronto with one year neuro-oncology under the supervision of Dr Eric Bouffet. [Editor’s note: Dr Bouffet is a Professor of Pediatrics and Director of the Brain Tumour Program at “Sick Kids”. See http://www.sickkids. ca/AboutSickKids/Directory/People/B/EricBouffet-Staff-Profile.html] IBTA: What led you to have an interest in the area of neuro-oncology in the developing countries? KS: I developed an interest quite early as I think we have a moral responsibility to give children all over the world similar chances - unfortunately not the case yet. The desire was driven by people like Hans Peter Wagner (longstanding Chair of the PODC group within SIOP), Eric Bouffet and Ronnie Barr (Chair of the essential medication working group within PODC and long time involvement with 42

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Above: Dr Katrin Scheinemann and a young patient in Canada. Photo courtesy of Roy Timm

the Latin America oncology group) who have worked and advocated for pediatric oncology in developing countries for a long time. IBTA: People in the First World look at the enormity of the challenges in the less developed countries and cannot immediately see where they might be able to help. Do you have some concepts in mind? KS: I think the concept is to start with tiny steps. It is important that the local people are supportive and want to improve care for their children, so to start with a site visit is very important also to understand the cultural and financial background. Sometimes just a re-organization of the existing resources can help. It is also very important to decide which diseases to treat and for which good palliative care is the better option. As a first step, treatment protocols for one or two diseases should be developed for which the resources are available to test feasibility. Often the access to radiation therapy is a big limitation in developing countries. Parallel

palliative care/supportive care should be developed as well. IBTA: What is more effective - bringing a promising trainee to a centre of excellence in a developed country, or sending experienced clinicians to mentor trainees in their own country? What is your view on the way in which trainees in the first approach might be then attracted to settle in the developed country? KS: I favor that we should go there and train the people in the real setup, because we need to know the resources. Interested people for sure can come for some elective time in another country, but the real training has to happen locally. IBTA: Is there a proven way of using today’s communications to interact between facilities in the First World and the developing countries? Has twinning worked? KS: Yes there are quite a few publications about successful twinning and the use of teleconferencing to improve care in


developing countries. Teleconferencing has become an important tool for tumor boards, case discussion and even teaching sessions. For example, we use it for the pediatric postgraduate program in Guyana for the resident teaching there. IBTA: Is there a value in medical and hospital facilities in First World countries donating their surplus or superseded equipment to facilities in poorer countries? KS: There is a potential value, but only if the local people get training in how to properly run and maintain the equipment and if spare parts are available. So, besides the equipment it is important to donate instructor and technician time as well.

IBTA: How do we, as those in developed countries, cope with the charge that we are just trying to impose a Western regime of service delivery in a developing country that might override historical methods of treatment that have been proven to be partly efficacious? KS: That is a major problem and that’s why site visits are so important. We have to adjust and modify our knowledge and experience to the local circumstances and learn from their experience. We can’t just take our treatment protocol to a resourcepoor country - it will fail terribly. Often the issues are also of a logistical nature that we don’t face in developed countries like transportation, telephones, nutrition, poverty, etc. - so lots of modification is needed.

IBTA: What should we do in situations where cultural attitudes mandate that the clinician should only deal with the family and the patient should not be told their prognosis? KS: We are facing the same problem here in Canada having people from different backgrounds. There is enough evidence in the literature that it is beneficial if the patient is aware of the diagnosis, treatment and prognosis. So as we do here, we should try to convince the families that it is beneficial, but at the same time respect the cultural background. n

Dr Scheinemann may be contacted at kschein@mcmaster.ca

The IronMatt Foundation The Matthew Larson Foundation for Pediatric Brain Tumors

Above: Matthew James Larson

THE Matthew Larson Foundation (also known as the IronMatt Foundation) was established in New Jersey, USA, after the death in 2007 of Matthew Larson just following his seventh birthday. He had been diagnosed with a brain tumour when he was two years old. A brochure advertising the Foundation states “Every child should be able to swim, bike and run until they are 70 NOT 7!” The Foundation has raised over

USD $6m in five years and gives funds to families of brain tumour patients that are experiencing difficulties, and also to pediatric brain tumor research projects. Matt’s Mom Kelly Larson explained to Brain Tumour magazine: “We make payments directly to third party service providers. Each case is treated differently. Some examples include: rent, utilities, mortgage, travel and lodging for treatments.” She added: “I was very fortunate that my husband had a good job and good insurance when Matt was sick. I stayed with Matt during the week and my husband would stay with him in the hospital on the weekends. We saw many families that had to leave their child alone because they had to go to work, didn’t have the means to have someone else care for their other kids. It broke my heart. I couldn’t imagine if I had to leave Matt while he was so sick.” The provision of practical assistance to families of brain tumour patients who are finding it difficult is a most

Above: IronMatt has provided financial assistance to over 150 families in 24 US States

worthy charitable activity. In last year’s Brain Tumour magazine the IBTA published a similar story about the Mission4Maureen group in the USA (see www.mission4maureen.org) While research funding is important we should not neglect those who are travelling the journey and their needs. n The Matthew Larson Foundation can be contacted at: info@ironmatt.org

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Creating a strand of memories: the Legacy Bead Program at St. Jude Children’s Research Hospital By Jessika Boles, MEd., CCLS, Child Life Specialist II, Solid Tumor/Neuro-Oncology Teens, St. Jude Children’s Research Hospital, Memphis, Tennessee, USA

IF you had to describe your legacy to someone else, what would you say? Many of us might have an easier time reporting on the legacy of historical or public figures such as Gandhi, Princess Diana, or Abraham Lincoln. I would guess that few of us have thought much about our own legacies, especially because our culture sometimes mistakenly suggests that legacy is only relevant after someone has died.

Legacy‌an active process of sharing In my job as a child life specialist, however, we view legacy in a very different way. We understand legacy as an active process of sharing yourself and your ideas, beliefs, or values with other people as you interact with them. Legacy is something we are all constantly building whether we are aware of it or not as our words, actions, and the things that we create impact the people around us. Child life specialists are healthcare professionals who specifically focus on helping children and families cope with the stressors of illness, hospitalization, and treatment. Many times, this means helping children and families to learn about the illness and treatment, develop coping plans for difficult days and events, and providing information and support along the way. At the same time, a major part of our job is to provide creative, therapeutic activities that give children and families fun experiences and positive memories. In essence, our hope is to help families create a legacy together that starts before, 44

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Above: Twelve year old Dylan, who has a medulloblastoma, proudly displays his Legacy Beads

continues through, and endures beyond the illness and its treatment.

Recognising unique treatment journeys In my years as a child life specialist for the brain tumor service at St. Jude, I have been able to meet hundreds of families

from all over the world and hear their unique stories about life before diagnosis. Even throughout treatment, these stories continued to unfold. In recognition of these unique treatment journeys, we created a new way for patients and families to document their legacies at our


hospital: The St. Jude Children’s Research Hospital Legacy Bead Program. The Legacy Bead Program was started in April of 2009 by the Child Life Program to acknowledge the journey patients travel when diagnosed with a serious illness such as a brain tumor. Through this program, patients can collect an array of colored glass beads that represent their experiences and activities during treatment. For example, there are triangular blue and pink beads for clinic visits and needle sticks, tube-shaped beads in beige and blue for surgeries and inpatient stays, round purple beads for learning to take medicine, and even polka dotted beads for milestones such as birthdays and good days.

A string of challenges…and memories As patients go through their day and the sometimes long list of appointments, they are able to collect the corresponding beads from a nurse, child life specialist, or staff member at nearly every stop. Some of these experiences may be rather tame, such as meeting a social worker for the first time or visiting occupational therapy; other times the bead may represent a stressful or invasive procedure such as receiving a course of chemotherapy or undergoing a lumbar puncture. In some cases, a “special accomplishment” bead can be just the right thing to recognize the child’s efforts to overcome their fears and cope with a difficult procedure. Once they reach the end of treatment, each child receives a “No More Chemo,” “End of Transplant” or “End of Radiation” bead to complete their collection. Oftentimes, the final string of beads is much too long for a simple necklace or keychain, so some children have come up with new ways to use or display their beads. In fact, some children have chosen to make a necklace from their favorite beads, use them as a garland for the Christmas tree, store their beads in a decorative glass vase, or divide them up to make bracelets for family members and friends who supported them along the way. No matter the finished product, The Legacy Bead Program gives each child and family the opportunity to tell their

story in a very tangible way - to build their treatment legacy from beginning to end.

Dylan’s story The Legacy Bead Program has given Dylan, a 12 year-old with recurrent medulloblastoma, a concrete way to represent his long and complicated treatment journey. Dylan was initially diagnosed nearly five years ago, but began collecting Legacy Beads once the program started in 2009. Since then, his brain tumor returned and he has had to receive additional radiation therapy. Although this recurrence has been understandably more stressful for Dylan and his family than his initial diagnosis, he has enjoyed collecting legacy beads as a way to explain his hospital experiences to his parents, brother and sister who are not able to be at the hospital along with him and his grandmother. Each of his ups and downs, good days and bad days, remission and recurrence are memorialized forever on a string of nearly 300 beads. He plans to use his beads to help his classmates understand what it is like to have a brain tumor and receive treatment at a hospital far away from his home. After a nearly six-month-long block of hospitalization, Dylan recently returned home upon completing his radiation. As he neared the end of his treatment, he

came up with an idea to make a huge banner to thank his staff at St. Jude for their part in his care. We hung his sign in our main lobby for everyone to enjoy on his final day of radiation, and he even brought it with him to his last clinic appointment of the day so that his doctors and nurses could sign it. Even when all the paperwork had been completed and all the goodbyes had been said, before leaving clinic Dylan’s last stop was to pick up his final “End of Radiation,” “Special Accomplishment,” and “Goodbye” beads to share with his family and friends at home. As even Dylan himself might tell you, he is not sure what the future holds for him. However, the Legacy Bead Program has provided him with a concrete way to begin, build, and complete his legacy at St. Jude - and this string of memories will last forever. Like Dylan, many other patients at St. Jude have used the Legacy Bead Program as a way to document their hospital experiences, explain their treatment journey to others, and symbolize the memories made along the way. As the beads are strung together and the collection grows, the child’s legacy and its impact on friends, family, and staff grows as well. More than just pieces of colored glass, legacy beads represent hours, days, months, and sometimes even years of hospitalization and treatment. n

Many children’s oncology wards and pediatric centres have adopted the concept of acknowledging treatment and journey milestones by giving beads to their young patients. One program that has spread internationally is Beads of Courage (http://www. beadsofcourage.net/). In Canada the Kids with Cancer Society in Northern Alberta provides beads to Child Life Specialists and has a brochure with an extensive catalogue of beads for all occasions. Left: Excerpt from the North Alberta, Canada, Kids with Cancer Society “Beaded Journey Guide”

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Dear Doctor... Janet Dukowski is a brain tumour survivor and lives in Vancouver, Canada, where she works as a Registered Dietician at Vancouver General Hospital

tesy Photo cour

owles of Karla Kn

Dear Doctor, My name is Janet Dukowski and I’m a brain tumour patient living in Vancouver, British Columbia, Canada. I was diagnosed with an oligoastrocytoma in 2009. One night, I had a grand mal seizure, which took me to the hospital. I had a CT scan and an MRI, and was diagnosed with a brain tumour by morning. I remained in hospital until I had my craniotomy. Up until that point, I had been told that my tumour was benign, and that further treatments would be highly unnecessary. It wasn’t until a few weeks later, sitting in the office with my oncologist (who was over an hour late and didn’t have the right chart for me not a good start), that I received the pathology results - my tumour was malignant, and I was going to have to go through both chemotherapy and radiation. Time stood still at that point, and although there were three of us in the room with the doctor, none of us had come prepared to ask questions about this “new” diagnosis. As we didn’t seem to have any questions, the oncologist took his chance to go and see his other patients.

46

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2.

We were left in the dark, wondering what was going to happen next. My life had suddenly changed permanently. It wasn’t until my first consultation with the British Columbia (BC) Cancer Agency that I could see a light at the end of the tunnel. They did a thorough patient interview, took the time to outline my treatment options, and answered all of my questions. They gave me hope when everything seemed hopeless. I’m writing to thank all of the healthcare professionals and researchers who have dedicated their lives to this devastating disease. Without you, I would not be here today. I would also like to thank my healthcare team at the BC Cancer Agency - I am truly appreciative of everything they have done for me too. But I also wanted to share some of my thoughts in this letter to you on how doctors communicate with patients. I’ve had a bit of experience of this now. Maybe what I say will strike a chord. Maybe it will help. Being given a brain tumour diagnosis is the most life-altering event that has ever happened to me. I now appreciate that the way in which a clinician communicates the devastating news of a brain tumour diagnosis to the patient can have a significant positive or negative impact on that person’s journey, no matter how long or short that journey might be. As I see it - and having been on the receiving end of some tremendously upsetting news when I was diagnosed with my brain tumour - there are some things clinicians should do when delivering bad news. From the patient perspective, it’s really important to take a bit of extra time to learn about who your patient is as a person during the first appointment. I know that time for appointments is limited and you have many other patients to see in your day. So, in the first place, I think it’s best to be up-front about the length of the initial session. For example, let the patient know that you have one hour (or whatever) to spend with them. When there are approximately 15 minutes remaining in the session, you could say: “I am aware of the time, and we have about 15 minutes remaining in our session - have I addressed all of your priorities today? Do you have any remaining questions I can answer during these last 15 minutes?” Please also reassure patients that there is no such thing as a “stupid” question! However long you have with the patient during that first, difficult and life-changing meeting, try and take the time to listen to the patient’s individual story, and gain some insight into what they have been through up to this point. Ask the patient what he or she already knows about brain tumours, and more importantly what they want to know at this time.


You will get to know the patient beyond the medical history in their chart. You will see the patient as the individual that they are and not only by their tumour type. Patients and their families will be very grateful to you for this approach! We are all different and I don’t think there is any such thing as a “typical brain tumour patient”. So the “cookie cutter” approach - using the same prepared speech for every patient - may not address an individual patient’s concerns and priorities. I believe that a personalized approach at the initial appointment can go a very long way in developing a mutually respectful and trusting relationship between patient and doctor and can help to soften the blow of such a terrifying diagnosis. And always - keep in mind that although you have probably had to give this diagnosis to many patients in the past, this is the first time that this particular patient is hearing the devastating news.

Another thing… Most patients and their families are understandably incredibly nervous whenever they go to see their doctors. It’s really helpful if the doctor is calm and relaxed in the appointment and most especially, when delivering bad news. Being calm and focusing your time on the patient will create an environment that helps the patient (and his or her family, if they come to the appointment) to better absorb and retain the information you give. Being told you have a brain tumour - no matter what age you are - is a highly emotional and frightening time. On giving the news, allow the patient a few minutes to sort through their emotions and absorb their diagnosis. Keep the information during this appointment specific, and remind the patient that there will be more meetings later on to discuss future questions and concerns. It also helps to repeat your key points and takeaway message. Many patients are in a fog of disbelief when they get their diagnosis so they sometimes don’t hear things properly the first time they are said. You can also suggest to the patient and/or family members/caregivers that they write down certain key points that you would like them to remember. Whatever the patient says, keep in mind that they are terrified and you need to make them feel that their questions (no matter how many times you’ve heard them before) are extremely important to you. And please, if you can, make sure and give the patients and their families written resource materials, including commonly asked questions with answers, as well as contact numbers for physicians, nurses, social workers, and any local brain tumour patient

3.

4.

organizations which offer support, information and advocacy. I can’t tell you how important this is to do. With regard to the notion of hope you, as a doctor, are one of the most important sources of hope to a brain tumour patient and their family because you are an expert in this field of medicine. Delivering a message of hope in what is seemingly a hopeless disease can be a real challenge. I know that. And the message also has to be truthful as well, making it even harder to be positive about what is often seen as an utterly hopeless situation. But you can give a message of hope without sacrificing either truth or hope. You can say that this is a tough disease, that it will change one’s life forever and that the journey may be full of substantial challenges. But you could stress at the same time that you are going to give your patient the best care humanly possible. You are going to do your utmost to help in any way you can. You can tell the patient that there have been some significant advances in the treatment of brain tumours and that the science and treatments are changing and improving. You can tell them that there are a number of new therapies in the developmental pipeline. You can communicate your dedication and determination to the patient, and explain how you want a positive outcome for him or her as much as they do. What about the tough question: “How much time do I have?” Well, I think that a clinician’s prognosis is really only a “best guess” or estimation based on averages, and unless a patient is adamant about a timeframe, perhaps a statement of specific months and years is best left unsaid, certainly in the early days. You could tell the patient some success stories. There are always people who overcome the odds and become long-term brain tumour survivors. I have met people like this who have lived beyond what everyone expected and who have confounded the odds. We all need to accept our diagnosis and understand the significant challenges but we can all hope that we might be a longterm survivor too. I want to thank you for taking the time to read this letter and for helping brain tumour patients like me to live the “new normal”.

Yours sincerely,

Janet Dukowski Brain Tumour

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Brain tumor treatment in Nigeria: challenges and solutions By Dr James A Balogun, Consultant Neurosurgeon Federal Medical Center, Owo, Ondo State, Nigeria

I

was born and raised in the northern part of Nigeria, in the cities of Sokoto and Minna. I had no one within my family as a reference point in terms of medicine and research. I am the first medical doctor in my family. My passion for medicine was purely innate and helped by the attitude of a physician in Minna who treated me for malaria when I was ten years old. His dedication and personal commitment to me, even though I was a young person, remained indelibly in my mind. I was drawn to the field of surgery because it has a technical aspect aside from the therapeutics of medicine. My interest in neurosurgery was stimulated during my first exposure to the specialty, late in my training as a rotating house officer. This interest was further established during my time as a rotating surgical resident at the University College Hospital, Ibadan, Nigeria.

Motivated by brain tumour patients and mentors My interest in brain tumors was developed during the course of my neurosurgery training at the University College Hospital, Ibadan, Nigeria. As I helped to care for patients with brain tumors, I was convinced that many of these patients would stand a better chance if specialized knowledge in neuro-oncology was available. This does not take credit away from the tremendous work of my trainers, led by Prof MT Shokunbi, who I appreciate deeply. 48

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Above: Dr James Balogun, a neurosurgeon from Nigeria, was inspired to enter the field of medicine by a doctor who treated him for malaria when he was ten years old

This motivation led me to doing a surgical neurooncology fellowship (thanks to the Greg Wilkins-Barrick Chair in international surgery), under the supervision of Drs Mark Bernstein, Fred Gentili and Gelareh Zadeh at the Toronto Western Hospital, Toronto, Canada where I am currently located. My interest is particularly in the management of intra-axial tumors using awake craniotomy and day surgery, as well as endoscopic management of pituitary and skull base tumors.

About Nigeria Nigeria is a country of some 160 million people with diverse ethnic and religious

backgrounds. Health allocation in the national budget is about 6% and payment for healthcare is still basically “from the pocket�. The country’s present neuroscience workforce consists of 34 neurosurgeons (i.e. one neurosurgeon for 4.7 million people); 50 neurologists (one for every 3.2 million people); and a few pediatric neurologists, neuro-radiologists and radiation oncologists. Neuropathology service is basically provided by general pathologists. The specialty of medical neuro oncologist is not well established. There are CT scanners in most tertiary health centers in Nigeria though only two of these are 64 slice scanners and there are about 20 MRI machines, mostly very low tesla machines. Basic pathological analysis of tumors is available but immunohistochemistry and detection of tumor markers are a real challenge. With regard to radiation in Nigeria, we have five linear accelerators and three Cobalt 60 machines for our 160 million people.

Many significant challenges The challenges in brain tumor treatment in Nigeria are myriad and include: n increasing disease burden; n late presentation; n very inadequate personnel involved with the care of brain tumour patients; n paucity of diagnostic, surgical and radiation equipment; n Insufficient pathology resources; n a very low level of advocacy with regard to brain tumors; n lack of government will power. If I could change or improve four things about the current state of brain tumor treatment in Nigeria today they would be: n better training and exposure of personnel;


increased collaboration with well- established centers; n provision of standard equipment in the core specialties of neuro- oncology particularly neurosurgery, neuropathology and neuro-radiology. n enhanced advocacy in terms of patient education and support for the provision of adequate care for patients with brain tumors. As I see it, there are solutions to some of the problems we face in Nigeria such as increasing our international networking and support systems, using telehealth approaches, e-pathology (via digital pathology scanners), setting up collaborative tissue banks and enabling the use of molecular analysis of tissue. Improved international training opportunities such as clinical/research fellowships, and medical safari (when an established medical specialist visits a less developed country to share his skills and knowledge with local medical professionals) will also be very beneficial. n

Finally… As a neurosurgeon in a country with many challenges, my own emotional and psychological support comes from my Christian faith, and interaction with my colleagues - particularly teachers/mentors. Support also comes from my extended family and especially my immediate family, particularly my wife, Folusho, who is also a doctor and my children, Toluwani and Moyinoluwa. My friends are also, a tremendous support. When not working, I relax by spending time with my family,

listening to inspirational Christian music, reading non-medical publications and watching sports. I am very grateful to the Society for NeuroOncology (SNO) which granted me a travel fellowship to attend my first SNO meeting in Washington D.C. in November 2012. The exposure this afforded me was tremendous and this included meeting with Kathy Oliver of the International Brain Tumour Alliance, which resulted in having a platform such as Brain Tumour magazine to share my thoughts, for which I am very appreciative. n

From the IBTA E News October 2012 Neurosurgery simulation: In a method reminiscent of the principles of a flight simulator, Canadian neurosurgeons and other researchers have developed a system called NeuroTouch that uses 3-D graphics and “haptic tool manipulators” (which provide tactile feedback) to train neurosurgeons in brain operations, including the removal of a brain tumour. Prototypes have been set up in seven teaching hospitals in Canada and other simulators have been deployed worldwide. n

ASSOCIATION of NEUROONCOLOGY

October 9-12

TURIN, ITALY

Lingotto Convention & Exhibition Centre

www.eano.eu

See you!

The EUROPEAN

2014

11th MEETING

EANO14_Inserat_124x175 25.02.13 15:26 Seite 1

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An extraordinary story By Kimberly M. Wallgren

Kimberly Wallgren lives in Indianapolis, Indiana (USA). Her father, Dallas, was diagnosed with an anaplastic ependymoma in 2002. Kimberly is a member of the Collaborative Ependymoma Research Network’s (CERN) Awareness and Outreach team. Here, she tells “Brain Tumour” magazine her family’s moving and inspirational story and describes how Dallas’ diagnosis inspired her life’s work.

I

currently support the Patient Awareness and Outreach component of the Collaborative Ependymoma Research Network, commonly referred to as the CERN Foundation. My background and ultimately how I got involved stems from the deeply personal and life changing event of my father’s diagnosis with a rare type of brain tumor called ependymoma when I was 21 years old. In fact, my connection to brain tumors truly started before my father’s diagnosis with a brain tumor and begins with my mother’s story.

The journey begins My mother, Janice, was young and in love with a handsome man named Joe. The two were married in South Carolina and soon after left for Newark, Ohio to start a life together where Joe took a job as an engineer and my mother as a teacher. After a few years of marriage, Joe was diagnosed with glioblastoma. They both decided that a child would bring joy to this hard time in their lives and would be an ultimate gift of love. Four short months after their darling son Anthony was born, Joe lost his battle to glioblastoma. My mom was now a single mother and survived on her faith and the support that people gave her. Over a year later, through dear friends, my mom was introduced to my dad, Dallas. The two found solace in each other and saw a hopeful relationship 50

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Above: Kimberly Wallgren representing the CERN Foundation at the 2012 Society for Neuro Oncology (SNO) Meeting in Washington, D.C.

ahead. They were married and later on that’s when my story officially started!

History repeats itself Our new family was exciting, imperfect, meaningful, and different. We all humbly came to the understanding that my life and our family were made possible because of Joe’s death and he would forever be intertwined with us. But cancer was really not an apparent part of our lives until 21 years later when we all started to notice changes in Dad. In fact, if it weren’t for Mom’s knowledge and first-hand experience of the symptoms of brain tumors, Dad’s diagnosis would have been much more delayed and potentially associated with a worse outcome.

I knew on July 17, 2002 that my life’s work would somehow be linked to helping those with brain cancer. I graduated with a B.S. in Marketing Management from Virginia Tech in 2003 and took a job in marketing with Blaine Pharmaceuticals, a magnesium supplement company that sold a product for people on cisplatin, a chemotherapy drug that Dad took.


Next, I moved into the neurosurgical device industry where I was a product manager for Integra Life Sciences specializing in Mayfield cranial stabilization equipment, a device that had been used on Dad twice. The most thrilling component of this job was my experience in the operating room with the neurosurgeons and perioperative nurses. I also supported many practical courses across the country which gave me the satisfaction of helping to better the industry in some way, no matter how small. Then after my father’s recurrence in 2006 I was determined to get even more involved and asked to take an active role in the newly founded CERN Foundation. I initially started in a marketing role and helped to create the marketing strategy, support materials and website. I have transitioned into a different role that is more focused on developing our tightknit ependymoma community through communication, referral support and

bridging the patient and professional community together.

My role at CERN I help provide referral information to patients and medical professionals, facilitate physician to physician consultations, and try to find answers to specific ependymoma questions that I receive. I also direct patients and caregivers to our website, which offers a lot of great resources to the ependymoma community including detailed information on the disease; questions to ask your doctors; updates on published research; external online resources, Ependymoma Outcomes (EO) Project survey; inspirational stories; and ways to get involved in the local community with our awareness day kit. Beyond our website, we have a vibrant Facebook page and Twitter account with a lot of activity and large follower base. Staying connected with the CERN foundation is very important as we 

Above: Kim Wallgren with husband Jake and their three children

Left: The entire family in Hawaii in the summer of 2012. Left to right: Jake, Kim, Dallas, Janice and Anthony with Jake and Kim’s three children.

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embark on new projects and research initiatives. I am contacted by patients as well as caregivers. Of course within the pediatric ependymoma community the caregiver is always the one to contact us but within the adult ependymoma community patients and caregivers alike reach out for information. We also get inquiries from members of the international ependymoma community. While we cannot offer second opinion information over the phone and via email, we do try to answer specific questions about ependymoma that we get and direct the person to the website for further information and resources. We also offer a physician-to-physician consult if desired and kindly ask for the treating clinical team to initiate communication.

The journey is overwhelming When families are newly diagnosed, the

overwhelming amount of information can feel extremely intimidating. Learning the medical terms - or even how to properly pronounce the name of the disease itself - takes a while. But eventually patients do become familiar with this new language and it becomes easier to discuss their disease freely. We took a very logical approach of communicating information by starting with the basics of ependymoma, then introducing diagnosis, and lastly, explaining treatment information. These are the first three topics available under the “Patients and Caregivers” section of the website. The other section of the website that is very popular is the CERN centers map where you can identify all of the pediatric and adult centers that are affiliated with the CERN Foundation. You can obtain the names of CERN members at the listed institutions and link to the organization’s website.

Ependymoma Awareness Day 2013 We are excited to announce the 2013 Ependymoma Awareness Day on April 18. This is a great event that allows and encourages people to host their own local awareness day. Last year, we had great success from people overseas hosting a special ceremony or event in a way that was personal to them. Some of these families emailed photos and newspaper articles after the awareness day so we could display them on our website. Please check out the CERN website for more details on this and how you can even ask your local government to get involved in recognizing the Ependymoma Awareness Day. n The CERN Foundation’s website can be found here: www.cern-foundation.org For further information, contact: kwallgren@cern-foundation.org

Palliative care - travelling First Class IN 2012 a Committee of the Australian Senate studied palliative care services and received submissions from a number of people. One of the people chosen to give verbal evidence was Ms Kim McCartney, a patient with a brain tumour. In its report the Committee quoted a powerful section of Ms McCartney’s evidence in which she described how she viewed palliative care - as an opportunity to travel First Class, rather than Fourth Class. This is what she said: “Ms McCartney: One of the things when I was diagnosed was that so many people were like: ‘Oh, you poor thing.’ It occurred to me one day that if someday [somebody] had walked up to me before I was diagnosed with this and said, ‘Hey! Do you reckon you might die one day?’ My answer would have to have been: ‘I reckon; I’m a good chance, yes.’ The only difference between the Kim of then and the Kim of now is that I have had confirmation of what

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I already knew. I have not changed; I am still no different to anybody else. Don’t ask me when; I don’t know. I might know how-perhaps. That is the only difference between me and any of you sitting here. I am exactly the same as everybody else. Like I said, it is just that I have had confirmation of what we all know... I think that if people could understand that, it would take [out] that whole taboo thing about: ‘Oh, tumour-poor thing.’ I am the same person. In the beginning, when people said, ‘Oh,’ I used to pat them back and say, ‘It’s okay; you’ve got a ticket too. You’re on a winner just the same as me.’ It is the truth! People look at me as if to say, ‘Oh.’ You can tell that they have never actually looked at it like that. It is like: ‘You’re on a winner; it’s all good.’ But, yes, I think that there does need to be some sort of campaign so that people actually do realise that death is universal - noone is exempt. If people could get their head around that they might be able to start coping

with the thought of palliative care. I remember saying to the hospice one day - they had come around and we were having a chat - ’I’m putting something out.’ They said, ‘What’s that?’ I said, ‘I’m on a train; I can’t get off. I know where the destination is and until the train stops there I can’t get off. But I do have a choice. I can choose to travel third class, on a splintery wooden bench with no back on it and my feet just not quite touching the floor, or I can opt to go first class, with the Jason recliner, a nice cuppa and a magazine - I’ll choose first class.’ I said to the girl: ‘And that’s why you’re here.’ I meant it. I do have a choice on how I can exit this world, and I am going to choose the most comfortable. That is my best explanation of palliative care: choosing to exit first class, not fourth class.” n (Source: Australian Senate, Community Affairs References Committee, Report, Palliative Care in Australia, October 2012, pages 194 and 195.)


GFME 10 ans GFME, Glioblastoma Fundation Michele Esnault, established in 2001 is a French-based (Marseille), patient-oriented, support group involved in brain tumors. GFME translates and publishes in French scientific publications of Pubmed and Asco on primary brain tumors. The association gives support, help, guidance on treatments and clinical trials for adults and children diagnosed with brain tumor. GFME works in partnership with ARTC, Brain Tumor Association For Research to rise funds. GFME is a website http://gfme.free.fr a quarterly magazine, a phone assistance (33) 04.91.64.55.86, and two mailing-lists (gfme@yahoogroupes.fr and astrocytomegfme@yahoogroupes.fr).The group includes 750 patients, care givers, friends and family members around the globe. For more details gfme@free.fr

Transforming tomorrow,

today.

• Driving research to accelerate discovery of new therapies • Educating and empowering brain tumor patients and families • Advocating on brain tumor issues • Raising awareness • Inspiring hope

Learn more at www.braintumor.org

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Out of tragedy inspiration, determination and hope By Andy Foote Chair of the Board, The Brain Tumour Charity, UK

O

ur story is typical of most brain tumour families I’ve come across over the years. The diagnosis of an ependymoma in our young son Joseph in 2000 came out of the blue and completely hit us for six. Our daughter Nancie was five and Joseph was two. I ran a successful property business, my wife Judy was a happy stay-at-home Mum and life was good. We paid a charitable donation of £2 a month to Cancer Research UK and that was the extent of our relationship with cancer. We were planning a bigger family. The two things that have stayed with me from the moment of Joseph’s diagnosis are how much of a shock it was and how frustrating the conversation with the doctor was. Me: “Is he going to die?” Consultant: “We don’t know.” Me: “What do you mean you don’t know!” Consultant: “The five year survival rate is 15%, that’s all we know.”

A whole new world

Picture courtesy of BPM Media.

Above: Andy Foote and his son Joe

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I was used to the business world where everything is black and white; you’re either in or you’re out. This was a whole new world of grey where nobody could be sure of anything and the stakes were the highest imaginable. What a living nightmare! Surely this had to change. After the dust had settled and I regained my composure, I was determined to change that conversation in the future for those families who sadly were going to follow in our footsteps. At that time I believed I could help to change it and I still do today. Money. Research. New treatments. Higher survival rates. There’s obviously more to it than that but basically that’s


it. That’s what the other cancers have achieved over the past 30 years so why can’t we in the brain tumour community? The simple answer is…we can and we will.

A force for change In 2001, supported by our family and friends, my wife Judy and I, started to raise funds in addition to running the business and over the years we were quite successful, funding £2M worth of research at Nottingham University in the UK. But everything changed when Joe died in 2007. It was another huge shock because we honestly never believed he was going to lose his battle. We knew we’d find a way or a treatment somewhere in this enormous world and we did. After looking for treatments in places like China and Russia, most countries in Europe and over half of the 50 States in America I had a list of 30 different treatments. Most were conventional and a few were alternative. We tried a few of the conventional treatments passively as we went along during the seven years but without success. Eventually we were in a corner and we had one last chance. We picked the best of the conventional bunch - aggressive surgery attempting a fifth gross total resection, followed by re-irradiation. It failed. Again, I had to wait for the dust to settle, because if I thought the diagnosis was hard to deal with, losing Joe seven years later was all-consuming. In 2010 I decided to take a more committed approach and sold the business in order to focus full time on the brain tumour issue. I started by visiting some of the other UK charities to find out what was going on and soon realised that one of the reasons that this particular sector had been held back was that the 40+ registered brain tumour charities in the UK were not “getting through” to the two large audiences: the general public and the government. During these visits I met some very impressive individuals who were running their charities with vision and passion. They all had the same view: collaboration and merging was the way forward. If we all joined together we could have a much larger voice and make a much bigger impact at Government level and in raising

Above: Andy Foote (left) and his then-five-year-old son, Joseph. “Coming home from work was always fun time!” said Andy. This photo was taken in 2003

awareness in the general public. They were all thinking the same and this was truly inspiring. It led me to believe that we were entering exciting times and that the brain tumour issue was at the base of a steep curve of activity and awareness. During the twelve months of 2012, with the agreement of all the Trustees, three of the major UK charities had all merged and the momentum had begun.

Above: Messing about on the river - Joseph Foote, then age six, with Dad Andy in 2004

A life-changing experience Over my career I’ve enjoyed building businesses and have learned that the most important thing for success is the people within them. I’m currently working with the creative, passionate founders of The Brain Tumour Charity (formerly the Samantha Dickson Brain Tumour Trust) Neil and Angela Dickson, and a team of committed, talented Trustees. In addition to this, our CEO of The Brain Tumour Charity, Sarah Lindsell, is an impressive individual who is taking the merged organisation forward. All this means that the journey to change that original conversation I had with the doctor when Joe was diagnosed thirteen years ago has well and truly picked up speed. This whole experience has changed our family’s lives in so many ways. We never thought we’d end up with one living child

- it seems so alien to our dreams. Nancie is now 18 and her own experience has inspired her to be a singer/songwriter. Her main genre is dance music but she also composes power-ballads to “Let it all out” as one of her song titles states. You can find her on YouTube. Sometimes I imagine how life could have been so different for us. But then again, that difference could have been that one of us was knocked down by a bus 13 years ago instead of Joe being diagnosed with a brain tumour. The reality is that these are the cards I’ve been dealt. And so I should play the best hand I can. I’ll stop playing when that conversation from over a decade ago with the consultant changes and instead the doctor says: “He’ll probably be okay. We’ve got new treatments now and the survival rate is more than 80%.” n Brain Tumour

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The IBTA at ISPNO Toronto in 2012 THE 15th meeting of the scientific conference of the International Society for Pediatric Neuro Oncology (ISPNO) was held in Toronto during 24-27 June 2012 and was attended by nearly 1000 people from 59 countries. This is the principal international meeting where clinicians and researchers who are involved in the area of paediatric neuro-oncology discuss promising new therapies and research. On this occasion there were 602 research abstracts lodged in eighteen different categories. The meeting was very busy with a couple of hours set aside for a more

informal social function during a break in the proceedings between the many scientific sessions. Intense networking took place during the refreshment and meal breaks. The ISPNO organisers invited a number of patient advocacy groups, including the IBTA, to attend and have display tables showcasing their information materials for families of newly-diagnosed patients. The IBTA distributed its 140-page Brain Tumour magazine to all participants. Events like this do not just happen. They require comprehensive organisation which can commence several years prior to the conference date. For the 2012 ISPNO

conference the local organising committee headed by Toronto clinician and researcher Dr Eric Bouffet - received assistance from the staff of the US-based Society for Neuro Oncology (SNO), staff from Dr Bouffet’s hospital and a professional conference organiser. The next ISPNO conference will be held in Singapore in 2014. See an article in this edition of Brain Tumour about that meeting by the Organising Chair Dr Stewart Kellie. Here is a selection of photographs from Toronto which convey some impressions of the 2012 conference. Several of the photos were taken by the official conference photographer. n

Above left: Chas Haynes (left), Executive Director, SNO and Dr Eric Bouffet, Chair of the local organising committee of ISPNO Toronto 2012. Top right: Jan Esenwein (second from left) from SNO, together with Linda Greer (SNO) (not pictured here) and others helped staff the registration desk. Bottom right: Jan Esenwein confirms Professor Tai-Tong Wong’s (Taiwan) registration for the Conference. See interview with the Professor in another section of this magazine. On Jan’s right is Linda Greer, also from the SNO secretariat.

Above left: Josephine Zovak (right) pictured with conference helper Connie Grillo (left). Josephine, who is the daughter of IBTA Chair Denis Strangman, assisted at the ISPNO registration desk and on the IBTA display table. Centre: Dr Eric Bouffet (left) with Sophie Yergeau (centre) and Sandra Carbone Walker (right) who were key behind-the-scene organisers for the conference. Right: A closely-packed auditorium for a presentation on the first day.

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Left: One of the most moving occasions at the conference was a presentation by Jillian Smith (second from right in the above slide), who spoke about her late sister Sarah’s journey with a brain tumour. Sarah is pictured second from the left. The presentation brought home to participants the “human face” of the disease that they are trying to combat. The Smith family are from London, Ontario, Canada, and a photo of Sarah in a stroller during a brain tumour awareness raising walk in Toronto was featured on the front cover of the IBTA’s 2010 edition of Brain Tumour magazine. Jillian’s presentation received a standing ovation from the assembled researchers and health professionals.

Above: Jillian Smith speaks to the audience.

Above: Alexandra Sierra from the American

Above: Board member Dr Paul Fisher and Director

Dr Bouffet is chairing.

Brain Tumor Association looked after the

of Research Carrie Treadwell from the National Brain

ABTA display.

Tumor Society (NBTS) were also at the conference.

Above: Angela Dickson (left) who established the Samantha Dickson Brain Tumour Trust in the UK in 1996 with her husband Neil, is pictured with IBTA Chair Denis Strangman at the ISPNO conference. The Trust was named in honour of the Dickson’s daughter Samantha, who passed away from a brain tumour. The Dickson’s organisation has been a major funder of paediatric brain tumour research and at the conference cemented a new international collaborative effort. The Trust recently changed its name to The Brain Tumour Charity (TBTC) and has now merged with Brain Tumour

Above: Kelly Larson (left) and colleague Carolyn Layton looked after the IronMatt Foundation display.

UK, keeping the TBTC name (see interview in this

Kelly established the Foundation in 2007 in honour of her seven-year-old son Matt who died from a

magazine with Andy Foote, the new TBTC Chair).

brain tumour. See the item in this magazine about the Foundation and its work.

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Above: An important feature of scientific

Above: Janic Gorayeb from the Brain Tumour

conferences is the poster display featuring

Foundation of Canada looked after the

Above: Dr Stewart Goldman (left, from

summaries of new and on-going research and

Foundation’s display at ISPNO. See interview

Children’s Memorial Hospital, Chicago) in

trials. Here is a section of the ISPNO poster

in this edition of Brain Tumour magazine

front of the IBTA display banner at ISPNO.

display. SNO staff member Linda Greer looked

with Janic about her work with clinicians and

Dr Goldman delivered a positive report of a

after the assembly and organisation of the

health professionals

trial involving the dexamethasone-sparing

posters displayed at Toronto

drug Xerecept and also spoke at the Family Session, a traditional feature of the ISPNO meeting. It was after hearing Washington paediatric neuro oncologist Dr Roger Packer speak at the Family Session held during the Vienna ISPNO 2010 conference that the IBTA asked him to contribute an article to our 2011 edition of Brain Tumour magazine contrasting paediatric and adult brain tumours, which was very well received by our readers. Dr Packer was Chair of the International Organising Committee for the Toronto Conference

Above: Participants mingle at a social function organised during the conference

Above: IBTA Chair Denis Strangman (left) with Denise Bebenek (right), who spoke at the conference dinner. Denise established “Meagan’s Walk - Creating a Circle of Hope” in Toronto, which has raised over CAN $2.7m for brain tumour research since 2002. They also had a display stand at the conference. The Walk’s name came from Denise’s daughter Meagan who died from a brain tumour in June 2001. Talking about what led them to become brain tumour advocates, Denise and Denis discovered that Meagan and Denis’s wife Margaret both died from a brain tumour, nine thousand miles apart, on approximately the same day in June 2001.

58

Both Denise and Denis became involved in brain

Above: On the afternoon after the close of the official conference there was a special workshop on low

tumour advocacy work the following year

grade glioma which was held with the assistance of the Paediatric Low Grade Astrocytoma Foundation

Brain Tumour


Proof of Heaven -

A Neurosurgeon’s Journey into the Afterlife Eben Alexander, Simon and Schuster, USA, 2012 ISBN 978-1-4516-9518-2. 196 pps

THIS book has been written by an experienced practical and academic neurosurgeon from Virginia, USA, Dr Eben Alexander, who was responsible during his career for 150 peer-reviewed publications and the development of certain stereotactic radiosurgery procedures while working at the Harvard Medical School in Boston. Dr Alexander was adopted as a baby by a neurosurgeon and his wife. He did not meet his birth parents until 2007. Dr Alexander undertook his residency at Duke University, an institution which is well known in the brain tumour community, and also undertook a fellowship at NewcastleUpon-Tyne in the United Kingdom. In 2008 Dr Alexander developed E. coli bacterial meningitis and, at age 54, following a grand mal seizure, slipped into a coma for six days during which his care team did not expect him to survive. His Glasgow Coma Scale reading was 8 out of 15 and declining. While in this coma he underwent a near death experience (NDE), which is the main subject of his book. While previously sceptical about such experiences he is certain that what he saw and heard during his NDE was real. His story was featured on the cover of Newsweek magazine in 2012 and one million copies of his book in hardback, paperback and electronic format, were distributed. Dr Alexander’s book has created controversy and debate. NDEs are not as rare as one might imagine. My late wife experienced an

NDE in 1987, following a cardiac arrest in hospital. NDEs were regarded as sufficiently common for the nurses in her cardiac ward to maintain a file of patients’ experiences. My wife later vividly described what she had witnessed (see: http://www. ozbraintumour.org/Talk.html). Thirteen years later she developed a glioblastoma multiforme brain tumour to which she succumbed in 2001 but neither she nor I have ever suggested that there was any necessary connection between the brain tumour and her earlier NDE. Dr Alexander’s book is well written and edited with alternating information about what he was experiencing during his NDE and information about what his family and the doctors were doing while he was in a coma - obviously collated after the event from his medical records and what he had been told. In his NDE Dr Alexander encountered a “beautiful girl with high cheekbones and deep blue eyes” who journeyed with him, and any questions he had were simultaneously answered in his mind. Dr Alexander and the girl were accompanied by millions of butterflies and flocks of transparent orbs. He refers to “Om” as the centre of this existence and we are invited to interpret this as God. “Om” was the sound he heard and which he associated “with that omniscient, omnipotent, and unconditionally loving God”. He frequently describes his perspective as being that of an “earthworm’s-eye view” of what he refers to as “The Core” and “The Gateway”. In the NDE he saw a pure white light and “a living sound, like the richest most complex, most beautiful piece of music you’ve ever heard.” His experience has sharpened his belief in a God.

While in his coma, Dr Alexander’s wife arranged for a “channel” to try and contact him but when this “medium” made her attempt she felt that Dr Alexander was too far away to be reached. I think that one can believe in NDEs but still question whether “channels” or “mediums” can contact the dead or people who are in a coma. For those who have a religious faith grounding this kind of activity is cautioned against as attempting to play God and interfering in the supernatural. When my late wife was known to have a terminal brain tumour and her remaining time on earth was drawing to a close, several people did ask her to convey messages to their loved ones “when she passed to the other side”. My wife politely listened to them but I am not sure how she responded and, in fact, those episodes are a salutary reminder to be careful of who is allowed to converse with a dying person although it is impossible to be part of everything that is being said. Dr Alexander’s background, experience and standing have no doubt contributed to the enormous interest in what he has to say but the interest can also be attributed to a continuing fascination by most people in what lies beyond our time on earth. Being diagnosed with any life-threatening illness brings into sharp and immediate focus the meaning of life and what might happen after that life is over. The reader of this book will find it challenging and a stimulus to examine one’s own beliefs of whatever nature. But ultimately the book should perhaps be considered as an honest and sincere story based on the personal experience of an intelligent man who went through a huge personal, life-changing trauma. n DS Brain Tumour

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Professor Tai-Tong Wong - from farmhouse to pediatric neurosurgical suite By Professor Tai-Tong Wong Taipei, The Republic of China

I

spent my childhood in Macau where I was born on October 20, 1949. I attended Sea Star Primary School, a Catholic school that teaches children from low income families. Father Tam Chi-Ching was a good educator with affectionate love for children. I then studied at Pui Ching Middle School, a Christian school, which was one of the best schools in Macau. I took an interest in biology there. In 1964, my family moved to Hong Kong and I went to Hong Kong Ling Ying High School which was also a Christian school. In the period when I was between five and 14 years old, we lived in a shabby farm house in the suburbs of Hong Kong between a small hill and the outlet of a branch of the river. It was a beautiful and calm place to spend a childhood.

What inspired me to become a doctor? In terms of what inspired me to enter the world of medicine - at an early age I was twice admitted as a patient to Kiang Wu Hospital. The hospital was established in 1871 and Dr. Sun Yat-Sen, the Father of the Republic of China, practiced there in 1892. Even now the image of that hospital and the quality care I received there remain with me. This might have been my initial motivation to study medicine. No one in my family had been involved in medicine before me. In high school, the school master was a famous educator. His son, the vice school master, used English textbooks for calculus, physics, chemistry, and biology. The school also taught English typing. All of this background facilitated my study of medicine. I eventually became a pediatric neurosurgeon. 60

Brain Tumour

Other than new targeting drug development, to enhance anticancer drug distribution specifically to the region of malignant brain tumor by using sonication technique along with an active liganded drug may open a window to avoid stem cell rescue for systemic high dose chemotherapy.

How do I relax when I’m not working as a pediatric neurosurgeon?

Above: Pediatric neurosurgeon Professor Tai-Tong Wong

To practice pediatric neurosurgery is very challenging. Frequently we have to face complications and difficult-to-manage patient conditions. I usually keep calm although my emotions do sometimes move up and down. I try to remain patient and positive in solving whatever problem I am faced with. I have found that this is the most effective way.

When I was young, I played ping-pong (at which I was very good), basketball, and soccer. Occasionally, I now swim. I like music but I cannot play. I remember that at middle school, three teachers regularly organized music night on Saturdays. They introduced classical music to students so that we could learn how to enjoy and appreciate it. Sometimes, my wife and I drive to the nearby grass mountain, a national garden, within Taipei City. And of course being able to sleep a bit longer on a Sunday morning is always good relaxation for me! n

What does the future hold? In terms of the future, I would expect there to be significant breakthroughs in the treatment of benign brain tumors in the next ten years. Recently, we have seen the advanced development of high intensity focus ultrasound (HIFU). It has been successful for targeting deep brain locus. Ultrasound is different from radiation. We can apply ultrasound repeatedly to shrink a benign tumor up to its margin and still be able to preserve the surrounding normal brain tissue. For malignant tumors, this would be difficult.

From the IBTA E News February 2013 Meningiomas: An international team of researchers has identified four new genetic suspects to add to the already-identified neurofibromin 2 as being relevant to the development of meningiomas. This may lead to personalised medical therapies for meningiomas which currently are primarily managed surgically. n


What to do when a cranial drill is missing

Above: “The Trinidad Express Newspapers story about the missing cranial drill.

IN the November 2012 issue of the IBTA’s E News bulletin we included the following item: “Neurosurgery drill missing: A Tobagonian man who waited for a week in Port of Spain (Trinidad) General Hospital for surgery to remove his

brain tumour died when no cranial drill was available. Apparently 60 patients had been waiting for brain surgery as there was no drill for three months. Rented drills kept breaking down and there were accusations of the hospital’s drill not being properly cleaned.” The IBTA E News entry was based on a news item in the Trinidad Express Newspapers (shown at left) which had attracted dozens of angry comments from irate readers, furious at this situation in Port of Spain. Our E-News report caught the eye of a UK consultant neurosurgeon who wrote to the IBTA: “If the article about a power drill not being available is really true then the neurosurgeons involved should be taken to task. We acquired the first Midas Rex high speed drill in the UK when I was a relatively

new consultant over 20 years ago. Prior to that we all performed neurosurgical operations of every type using a Hudson brace and bit and a Gigli saw. These are classic neurosurgical instruments and in case of events such as a drill being unavailable all neurosurgeons should be aware of these simple but highly effective instruments. Personally I try to ensure that our trainees have some awareness and knowledge of these so that they will not be trapped unable to help their patient because a high technology piece of equipment is not available. In a poorer country there is absolutely no excuse and the neurosurgeons should be ashamed. Perhaps the article and my comment should be circulated to all program directors for training in neurosurgery!” n

A Foundation of Hope – Devoted to funding a cure for brain tumors and providing support and outreach to patients and their families. Race For Research supports critical, cutting edge brain tumor research. Join us for the 14th annual Race For Research on September 21st 2013, Atlanta, Georgia, USA

Southeastern Brain Tumor Foundation - www.sbtf.org

Brain Tumour

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An interview with Janic Gorayeb of Brain Tumour Foundation of Canada Janic Gorayeb is the Health Information Specialist at Brain Tumour Foundation of Canada. Here, Janic talks about the important role that the Foundation plays as the only national brain tumour organization in Canada. IBTA: We have noticed the special effort that Brain Tumour Foundation of Canada puts into servicing its professional and research contacts. How does Brain Tumour Foundation of Canada see its role in this area? JG: As the only national brain tumour organization in Canada, we work collaboratively with health care professionals, researchers and other partners to serve the needs of the Canadian brain tumour patient and caregiver community. We have made a concerted effort to build relationships and educate the health care professionals in the neuro-oncology and neuroscience community in Canada. Ultimately our goal is that any health care professional who is working with those affected by a brain tumour will have a better understanding of the disease and the opportunities for patients. One way we do this is to assess the gaps in education and information around brain tumours and work to fill those needs by implementing programs and creating resources for health care professionals that will provide education and information around brain tumours. We offer in-service presentations, workshops and a new webinar series. We believe that these programs can optimize the work of the neuro-oncology and neuroscience community, translating into improved care for patients and families including referrals for support, information and education. IBTA: What are the services you provide that are most appreciated by the research and professional contacts you have? 62

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bachelor of science degree. This opportunity aims to get more researchers into the field of brain tumour research early in their scientific career. And since 1991 we have funded the Brain Tumour Tissue Bank based in London, Ontario, which provides brain tumour samples for neuro-oncology research conducted around the world. Brain tumour tissue samples are collected during neurosurgery. These samples are immediately frozen in liquid nitrogen. Each frozen specimen has a matching piece of tumour that is processed and later cut onto a slide for quality control. Rigorous quality assurance procedures Above: Janic Gorayeb from Brain Tumour Foundation ensure scientific quality. of Canada says: “Ultimately our goal is that any health The anonymous brain tumour tissue care professional who is working with those affected samples are then coded by number and by a brain tumour will have a better understanding of tracked in a comprehensive database. This the disease and the opportunities for patients.� level of detail allows the lab to meet very specific requests from researchers for tumour JG: Thanks to the generosity of donors, Brain type, grade and characteristics. Tumour Foundation of Canada is supporting The Brain Tumour Tissue Bank is housed and building the health care community by in state-of-the-art facilities at University enabling research through annual grants, Hospital, London Health Sciences Centre, fellowships, studentships, collaborative close to surgery. This ensures that gathering grants with partners, the Brain Tumour Tissue tissue samples and processing them is Bank as well as awards for neuroscience quick and efficient. nurses, oncology nurses and psychosocial Interested researchers can review health care professionals. the information on our website (www. Since 2004 we have provided a total braintumour.ca) and contact the tissue bank of 57 research grants up to $25,000 each. for information about what tumour types are This funding provides necessary seed currently available. money to test novel ideas so critical in the area of brain tumour research. Since 2010 IBTA: What rewards does contact with young researchers in Canada have had the health care professionals bring to Brain opportunity to apply for research fellowship Tumour Foundation of Canada? opportunities through the William Donald JG: Quite simply, the more health care Nash Brain Tumour Research Fellowship professionals and researchers in Canada and the Richard Motyka Brain Tumour know about Brain Tumour Foundation of Research Fellowship. Canada, the more brain tumour patients The research program has continued can be reached with tailored programs to expand in 2013 with the new research and services. These relationships also help studentship program for first-year medical to raise awareness about brain tumour students and second-year undergraduate research - both the advancements in the science students pursuing an honours field and the opportunities for funding.


IBTA: Do you have a special interest in this area due to your life experience or past employment? JG: I have extensive experience facilitating and developing educational programs and resources for health care professionals, patients and families at local and national levels, not only for Brain Tumour Foundation of Canada but in past roles with the Alzheimer Society and as a Resource Specialist with Pfizer Pharmaceuticals. In October 2003, at the age of 60, my aunt was diagnosed with glioblastoma multiforme and after two surgeries and radiation, she lost her battle very quickly, within eight months of her diagnosis. This was a shock to the family. In 2008, my work experience led me to a new role working for Brain Tumour Foundation of Canada. Having that personal connection to the impact of brain tumours, and a professional passion to create awareness and education around brain health, re-ignited this drive to work with a brain-related organization again. Knowing that our resources provide education and information to those affected by a brain tumour brings me great comfort. n

Study looks at long-term survivors of primary CNS lymphoma

DR. Nancy Doolittle (pictured at right), Associate Director of Clinical Research in the Neuro-Oncology and BloodBrain Barrier Program at Oregon Health

& Science University (USA), stands in front of her poster at the 2012 ASCO meeting. The poster summarized a study of long-term survivors of primary CNS lymphoma, which was conducted in collaboration with three universities in Germany. The investigators found that survivors who had been treated with methotrexate-based chemotherapy and whole brain radiation (WBRT) had poorer scores on long-term cognitive testing and more brain MR imaging abnormalities than survivors who had been treated with methotrexate-based chemotherapy without WBRT. IBTA CoDirector Kathy Oliver is also in the photo (pictured at left). n

The Norwegian Brain Tumour Association The Association was established in 2009 and is an independent, national organisation for people who have or have had brain tumours, their families and other interested parties.

Please see www.hjernesvulst.no If you are interested to sign in as a member or learn more about us, please contact us at post@hjernesvulst.no

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New Findings Suggest Allergies May Lower Risk of Glioma By Rebecca Huffenberger and Judith Schwartzbaum

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indings from a recent study conducted by Swedish, Norwegian, and US-based researchers lend additional credence to a theorized link between allergies and a decreased risk of certain brain cancers. This research suggests that for some individuals, allergies may have a protective effect against glioma, the most common type of malignant brain tumor. The association appears to be strongest among women with respiratory allergies and the most prevalent - and dangerous - subtype of glioma, known as glioblastoma.

Do allergies somehow protect against glioma? Earlier studies of the connection between allergies and reduced risk of brain tumors were reliant upon cancer patients’ selfreported allergy history, or on testing of blood samples collected after the time of diagnosis. Thanks to the Janus Serum Bank in Oslo, researchers have now been able to cross-reference blood samples from as far back as 1974 with decades of records from the Cancer Registry of Norway, all in pursuit of an essential question regarding the relationship between allergies and brain tumor risk: do allergies somehow protect against tumors? Or do tumors, prior to detection, interfere with the body’s allergic response? Evidence from the current study suggests that allergies reduce glioma risk, as subjects whose blood tested positive for allergy-related antibodies were found significantly less likely than those who tested negative to be subsequently diagnosed with glioma. This association was observed as long as 20 years before glioma diagnosis. The research team considers this their most important finding. Lead author, epidemiologist Judith Schwartzbaum, explains: “The longer 64

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Above: Epidemiologist Judith Schwartzbaum

Above: Freelance writer and editor Rebecca

is the lead author on a study of the

Huffenberger lives in Columbus, Ohio, USA

theorized link between allergies and glioma

before glioma diagnosis the effect of allergies is present, the less likely it is that the tumor is suppressing allergies. Therefore our findings suggest that some aspect of allergy reduces brain tumor risk.”

The role of immunoglobulin E antibodies Antibodies are proteins created by the immune system to attack undesirable substances that have entered the body. Allergens - such as pollen - represent one type of “invader” for antibodies to fight. The class of allergy-related antibodies studied in the current research is known as immunoglobulin E, or IgE for short. The scientists looked at two categories of IgE in the subjects’ blood samples: “allergenspecific” IgE, and the broader category of total IgE. For allergic individuals, exposure to irritants such as pollen or mold causes the immune system to send unique, or “allergen-specific”, IgE antibodies to attack the offender. In testing the blood samples

for allergen-specific IgE, Schwartzbaum and her team took into consideration the nine most common respiratory allergens in Norway, as well as two other allergens common elsewhere. The team also measured levels of total IgE in the samples. Total IgE is a more inclusive category, encompassing allergenspecific IgE antibodies along with other antibodies whose function has not yet been identified. The researchers then looked for relationships between elevated levels of allergen-specific IgE, total IgE, and risk of eventual glioma or glioblastoma. They used blood samples from 594 subjects ultimately diagnosed with glioma - 374 of whom were diagnosed with Glioblastoma - as well as 1,777 samples from subjects not diagnosed with glioma.

Putting together pieces of the puzzle The strongest link seen in the analysis was for women with elevated levels of allergen-specific IgE, who showed a


decreased glioblastoma risk of 54 percent. No similar decrease was observed in men. As for subjects with elevated levels of total IgE, men and women combined showed a 25 percent decreased risk of glioma overall. When findings were pared down to consider glioblastoma only, some decreased risk was observed, although it did not meet the study’s criterion for statistical significance. The association between elevated total IgE and subsequent tumor risk was also shown to differ by proximity to time of diagnosis. Subjects who tested positive for elevated total IgE were at a 46 percent lower risk of being diagnosed with glioma 20 years later; that approximate decreased risk was just 25 percent in comparisons using a shorter interval of two to 15 years. “There may be a trend. The closer the samples get to the time of diagnosis, the less help the IgE is in decreasing the risk for glioma... If the tumor were suppressing allergy, we would expect to see a bigger difference in risk near the time of diagnosis,” said Schwartzbaum. For the next step, Schwartzbaum will continue to explore samples from the Janus Serum Bank, this time examining concentrations of cytokines - proteins that regulate immune system response - to determine whether they, too, represent a piece of the puzzle. n

Courageous Tobin is presented with the Queen Elizabeth Diamond Jubilee Medal

Judith Schwartzbaum can be contacted at ja.schwartzbaum@gmail.com

The study referenced in this article was published in the Journal of the National Cancer Institute, August 22, 2012, Volume 104, pages 1251-9. Authors are: Judith Schwartzbaum of Ohio State University; Anders Ahlbom, Bo Ding, and Maria Feychting of the Karolinska Institutet, Stockholm, Sweden; Tom Grimsrud and Tom Borge Johannesen of the Cancer Registry of Norway; Liv Osnes of Ulleval University Hospital, Oslo, Norway; and Linda Karavodin of Karavodin Preclinical Consulting, US.

Tell the IBTA about your 2013 International Brain Tumour Awareness Week activities. Contact chair@theibta.org or kathy@theibta.org

CANADIAN Member of Parliament Bal Gosal, Minister of Sport, presented 13 year-old Tobin Haas from Brampton, Ontario with the Queen Elizabeth II Diamond Jubilee Medal for his advocacy work for childhood cancer, in particular paediatric brain tumours. Tobin is a three-time survivor of anaplastic ependymoma. In 2012, in honour of his tenyear battle, he raised over $11,000

(Canadian) for paediatric brain tumour research at The Hospital for Sick Children (“SickKids”) in Toronto. The funds were raised through an event, “Ten for Tobin”, which included an Xbox tournament, silent auction, head shaving and other activities. Tobin’s courageous attitude is inspirational and he has made a significant contribution to the paediatric brain tumour community in Canada. n

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As PBTF’s new CEO, I’m working to eliminate the challenges of childhood brain tumors By Robin Boettcher President and Chief Executive Officer of the Pediatric Brain Tumor Foundation (PBTF), USA

I

come to the office each morning with one goal in mind - to work myself and my employees out of a job. I’m on a mission to eliminate the challenges of childhood brain tumors. I became president and chief executive officer of the Pediatric Brain Tumor Foundation (PBTF) in September 2012, following the death of PBTF co-founder Dianne Traynor. I have an opportunity to build on the powerful foundation that Mike and Dianne Traynor created almost three decades ago. I’m excited and eager to help take us to the next level. My background for the last 30 years has been in the health nonprofit management and communications world. I worked at two of the nation’s largest voluntary health nonprofit organizations, and spent more than a decade as an Associated Press reporter. Before joining the PBTF, I served as vice president of chapter and community partnerships for the Miami-based National Parkinson Foundation (NPF), and established a new department there serving 25 chapters across the country. Our team also developed NPF’s first national signature fundraising walk program, raising more than $2 million in its first two years. I also worked as a national field director for the Leukemia & Lymphoma Society and served as president of the National Multiple Sclerosis Society’s Eastern North Carolina Chapter. My goal is to use the experience I’ve gained to grow the PBTF into the world’s largest non-governmental funder of children’s brain tumor research. My vision is that we will experience significant growth over the next three 66

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Above: Robin Boettcher, President and CEO of the Pediatric Brain Tumor Foundation in the United States

years. We’ve got a lot of work to do, but I’m very committed to raising more funds for this important mission. Our strategic plan will ultimately identify better treatments, provide more support for families, grow the PBTF’s scholarship program and get closer to discovering the cause of and cure for children’s brain tumors. We’re also implementing changes in the PBTF’s Ride for Kids program, a series of motorcycle events that generates the bulk of the Foundation’s revenue. This year, Ride for Kids will be held in 43 communities across the United States, offering a day of hope and fun for hundreds of local brain tumor patients and their families. In addition, we want to develop a second national signature event to engage more people, increase awareness and raise more funds to cure the kids. We’re also examining ways to expand PBTF’s research investment. The

Foundation funds research projects at three PBTF Institutes: Duke University, the University of California, San Francisco and the Hospital for Sick Children in Toronto. We’ll be working to develop more relationships and explore further opportunities for partnerships and collaborations in the best interest of our patients and families. Everything I do is with an eye toward increasing awareness of the devastating effects of children’s brain tumors and telling more people about the work we are doing. My day starts very early at the kitchen table, where I review that day’s schedule. I try not to put unrealistic pressures on myself and my staff, but there are times when I’m constantly checking my email and waking up in the middle of the night. It’s a big responsibility, and the buck stops with me. There’s a lot that I believe we can accomplish to move closer to a cure. When I’m not busy traveling to meet researchers or donors or collaborating with my staff, I like to relax at home in my kitchen, which is the comfort zone where I begin and end my day with family and friends. I’m energized by cooking new recipes and entertaining family and friends. My favorite dish to create is homemade pizza - made with anything I have on hand in my pantry. I’m thrilled to be back in North Carolina where PBTF is based and where my husband, Grant, and I have spent much of our lives. Living here, we are also nearer to our two grown daughters and close friends. I’m privileged, honored and very happy to be serving in this new role at PBTF. But I’d like to see us get to the end point. The way I see it, we’re in business to go out of business. n


Easy it’s not. Brain Tumour Research was launched in April 2009 to raise the profile and funding for brain tumour research in the UK and improve the chances for brain tumour patients. Charities who have united together to create Brain Tumour Research include: Ali’s Dream, Anna’s Hope, Astro Brain Tumour Fund, Brain and Spine Foundation, Brainstrust, Brain Tumour Research and Support Across Yorkshire, Brain Tumour Research Campaign, Brainwaves, Charlie’s Challenge, Children’s Brain Tumour Research Centre, Ellie Savage Memorial Trust, Ellie’s Fund, Headcase, Katy Holmes Trust, Levi’s Star, The Diana Ford Trust, The PPR Foundation, The Lisa Wiles Red Wellies Support Fund, Thorne Mason Trust and Trudy’s Trust.

Brain Tumour Research. A tough nut to crack.

www.braintumourresearch.org Tel: 01296 733011 info@braintumourresearch.org

Registered charity no: 1093411

        

  

 •  •  •  • 

 



  

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Legacy Brain Foundation Promotes Good Clean Fun THE Legacy Brain Foundation (LBF) is a non-profit charitable organization founded eight years ago in Dallas by a group of patients, caregivers, and healthcare professionals to assist brain and spinal cord tumor patients with the cost of their treatment. Through memorial gifts, private donations, silent auctions, and yearly fundraising dinners, LBF has raised over US $200,000 and awarded over 120 grants and scholarships. LBF provides grant support for Texas residents undergoing treatment for primary or metastatic central nervous system tumors. It also provides scholarship assistance for patients or children of brain tumor patients attending college. LBF board members have also used their culinary skills to draw attention to their mission. After one meeting, Kathy Bradham taught the entire group how to make cakeballs, a popular confection of cakecrumbs and icing, dipped in candy coating. The board also created cakeballs with the purple LBF logo for the foundation’s “Celebration of Life” event in 2011. Several board members have continued to sell cakeballs at holiday bazaars, hospitals, and businesses. In 2012 Mercedes-Benz donated $1000 to LBF after a local executive brought LBF cakeballs to a special event. Dr. Virginia Stark-Vance, a neurooncologist based at Medical City Hospital in Dallas, is LBF’s physician liaison and 68

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Above: Legacy Brain Foundation’s tempting display - cake balls and soap raise funds for brain tumors

the author of 100 Questions and Answers about Brain Tumors. Her co-author and patient M.L. Dubay (who was also one of the founders of LBF) launched a successful business, “Toffee Treats”, five years ago. M.L. has been featured in the local media as a 12-year brain tumor survivor pursuing her dream and promoting brain tumor awareness in the process. “M.L. inspired me,” Dr. Stark-Vance says. “I wanted to do something that was fun and creative that could still benefit the Legacy Brain Foundation.” When Dr. Stark-Vance began making soap as a hobby last year, LBF board member Dana McCann volunteered to sell it at craft bazaars and Southwest Airlines, where she works. Dr Stark-Vance says: “My goal was to make a gift that was beautiful, practical, and fragrant. I especially like making soap for children.

Some have cars, toy animals, or stickers embedded in them to encourage young children to wash their hands. I also use a variety of fragrances - cupcake, melon, coconut, baby powder - to appeal to both adults and children.” “Raising funds,” Dr. Stark-Vance concludes, “should be fun!” n Pictured are two red, white and green Christmas-themed cake balls and three bars of homemade soap from the Legacy Brain Foundation.


Wet weather, women and walking SALLY Payne, one of the IBTA’s advisors from Australia, participated in The “Wild Women On Top Sydney Coast Trek” which is an annual 50 kilometre team challenge. Sally wrote: “We completed the Trek on 2nd March 2012. The route is along Sydney’s coastline, including ocean and harbour beaches, headlands, cliff tops and bush tracks from Palm Beach to Balmoral. There are 1500 steps uphill along the way. More than 1200 participants were registered in 300 teams. Our Trek team included Di Cameron, Marta Evesson Brown, Janet Neville, Lily Evesson Brown, Fiona Towers, Lisa Barnett, Georgia Towers and Sam Towers.

Above: Heavy rain didn’t deter the walkers in this Australian trekking event on Sydney’s coastline

“The Trek is a fundraiser as well as an endurance challenge for the Fred Hollows Foundation. “My sister, Arianne, passed away from a brain tumour in 2011. The date of the Trek, 2nd March, was Arianne’s birthday so that helped me have the mental toughness needed to finish. We had trained a lot in very hot and very wet weather so were prepared. “However, as you can see from the photos, the day was the rainiest in memory and during the 14 hours of walking it

probably only stopped raining for about twenty minutes at a time. My Mum was our support crew and popped up every ten or fifteen kilometres with coffee, brownies and encouragement. “Arianne’s partner, Brett, and her children gave a very generous donation and all of our sponsors knew that whilst it was not for a brain tumour charity we were doing the walk in honour of Arianne. The mileage we achieved on our walk was symbolically donated to the IBTA’s “Walk Around the World for Brain Tumours.” n

Pioneering a Novel Treatment Modality for Solid Tumors www.novocure.com

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All ages enjoy the 2012 Astro Brain Tumour Fund’s Norfolk Family Walk

Día de la Concientización Latinoamericana en Tumores Cerebrales (Latin American Brain Tumour Awareness Day)

Above: Some of the young participants in the Astro Brain Tumour Fund Norfolk Family Walk at Holkham Hall (UK)

CHRISTINE Forecast let us know that the Astro Brain Tumour Fund had a very successful walk to raise awareness of brain tumours and funds for more research and support on a beautiful autumn day, Sunday 7th October 2012. She said: “Over 250 walkers - plus lots of their dogs - walked a combined total of 1339 miles around the lovely parkland at Holkham Hall in Norfolk (UK). The walkers who followed the ten mile route went out of the park to Wellsnext-the-Sea and back to Holkham along the beach.” Christine added: “We had a great range of ages walking from a four year old boy with a brain tumour to people in their eighties. A lady in her fifties who had nine brain tumours removed a couple of years ago and could not walk after her operations managed to walk ten miles which was an incredible achievement. Three toddlers toddled the one mile walk as one had a grandfather with a brain tumour who was too ill to attend. The children played games along the way - catch the duck, marble & ball games, dip in the bran tub. They all had a great time. There were many requests to organise the seventh walk next year which we will do! A fun day was had by all.” n

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Above: The official photograph of the Día de la Concientización Latinoamericana en Tumores Cerebrales

NEUROSURGEON Gabriel Vargas, M.D. wrote to the IBTA: “The Boards of Directors of the Section of the NeuroOncology and Base of Skull of the Asociación Colombiana de Neurocirugía ACNCx and Section of Oncological Neurosurgery of the Federación Latinoamericana de Sociedades de Neurocirugía FLANC, with the support of the Faculty of Health Sciences of the Universidad Autonoma de Bucaramanga UNAB, met on Friday November 2nd 2012 in the city of Bucaramanga, Colombia. “We celebrated the Día de la Concientización Latinoamericana en Tumores Cerebrales (Latin American Brain Tumour Awareness Day) supporting the International Brain Tumour Awareness Week, organized by the International Brain Tumour Alliance. “Fourteen medical specialists contributed through live and video

Above: Attendees at the Latin American Brain Tumour Awareness Day

conferences. Various topics regarding the study, research and current treatments of brain tumours were discussed. More than 400 people attended the event including faculty professors, physicians, students, patients and patients’ relatives. The whole scientific event, from 9 am to 5:30 pm, was transmitted in real time via the Internet. n For more information regarding the event go to: wwwneurooncologiaybasede craneoacncx.blogspot.com or www.neurocirugiaoncologica flanc.blogspot.com


My story... By David Fryer Farnham Common, UK

THIS is my story. In 1998 I had a seizure in the middle of the night. While it wasn’t pathologically proven at that time, it was assumed that the scans showed a brain tumour. At this point, it was decided not to do a biopsy, but to leave it and wait and see what happened. Seven years later in 2005, following a haemorrhage and an operation, my tumour was confirmed as a high grade oligodendroglioma. The tumour diagnosis has had a major impact on us from both a personal and business perspective. At the time I was initially diagnosed, I was running my own business (an IT software development business) employing some 35 people. We were also expecting our second child (Jess, now 14) who then arrived and had Respiratory Deficit Syndrome (RDS) and was put into intensive care. The combination of me being diagnosed with a brain tumour and Jess being diagnosed with RDS was extremely challenging for our family! I am currently employed however since September 2009 I have not been into the office having collapsed on the way to work at one stage. But I worked throughout four years of treatment. Fortunately I have permanent private health insurance which pays me a percentage of my salary. I’ve also received excellent medical treatment. What kind of advice would I give to newly-diagnosed brain tumour patients? Well, while the diagnosis of a brain tumour is pretty life shattering, try your best not to panic. Initial feedback from consultants and people you know may be very bleak. Try to be positive (easier said than done I know!). Initial assessments of your diagnosis are always based upon historical

Above: David Fryer

statistical information. New treatments are continuously being developed and are ‘re-writing’ the statistics book. Also, every tumour is unique and every individual is unique, so anything can happen… Why not approach things from a ‘can-do’ attitude? I also find it very helpful to attend a monthly brain tumour support group meeting where we share our experiences. I’ve also become very involved raising money for brain tumour research. What are the first three things on my wish list in relation to my brain tumour diagnosis? First, for my two daughters, to see me disease-free. Second, that research currently underway finds a cure for brain cancer patients. Third, that the DVLA (the Driver and Vehicle Licensing Agency in the UK) reviews their policies for brain tumour patients and their right to drive. The stress that losing your license can cause within the family can be a lot worse than the disease itself at times. But life for me is certainly not only about my brain tumour. I enjoy playing bridge (which I have learned since being off work) and this has been a real positive

for me. I go for walks and I listen to music. I also enjoy photography, computing and when I’m able, I try to get back onto the golf course. I also try and help other people where I can (through business, support groups, cancer charities, etc). And of course, most of all, I enjoy being with my family. It should be noted that whilst in this story I mention ‘I’ and ‘my’, having and living with a brain tumour is very much a team event with your carer and family. In my case, my carer is my wife, Carolyn. By working together, we give each other support and, I believe, make ourselves stronger and more able to cope with the trials and tribulations of the brain tumour journey. n

From the IBTA E News January 2013 Racoons and brain tumours: Veterinarians in the USA have observed an increase in the number of dead racoons who had brain tumours. All the racoons had a virus known as polyomavirus which does not spread to other animals or humans. The researchers are now trying to work out if the brain tumours were triggered by the virus or other variables. n

The IBTA seeks no financial contribution for a brain tumour organisation to be listed as a supporter for its major projects - we just want you to do something to raise awareness.

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The IBTA at ASCO 2012 IN 2012, the huge annual meeting of the American Society of Clinical Oncology (ASCO) at the McCormick Place Conference Center in Chicago (USA) attracted over 30,000 health professionals and others. There were more international attendees (52%) than domestic USA attendees (48%). Overseas participants came from 116 countries, including sizeable numbers from Germany, Japan, France, Canada, and the United Kingdom. About 600 of the professional attendees identified CNS tumours as their primary interest. ASCO has a special patient advocacy unit which recognises the importance of facilitating the attendance of cancer patient advocates at the conference. Advocates showcase their information materials at display booths and in the dedicated patient advocacy lounge, and mix with health professionals at the scientific sessions. The ASCO Annual Meeting, together with a handful of other key conferences - such as the annual meetings of the Society for Neuro Oncology (SNO) and the European Association of Neuro Oncology (EANO) - is a useful occasion for the IBTA to attend, which it has done since 2008. In 2012 the IBTA occupied a slot in the ASCO patient advocacy booth which is strategically located in one of the enormous exhibition halls at McCormick Place and is visible to many attendees as they make their way to the lunchtime food areas. By attending the ASCO meeting the IBTA can make itself known to other patient advocacy groups, companies, journalists, and health professionals, particularly the 600 participants with a primary interest in CNS tumours. We distribute copies of Brain Tumour magazine, renew old contacts and make new ones. We learn about promising new therapies and projects that are being researched, some of which might later be reported in Brain Tumour magazine or the IBTA’s monthly e-newsletter which goes to nearly 6,000 contacts around the world. The following photos illustrate the IBTA in action at ASCO 2012. n 72

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Above: One of the huge exhibition halls at McCormick Place (viewed from behind the glass on the wall of a nearby escalator) at a quiet time during one early morning before any sessions had commenced. Left: The IBTA’s slot in the combined 24-group ASCO patient advocacy booth with IBTA CoDirector Kathy Oliver (left) and Jean Arzbaecher (right), a Clinical Nurse Specialist from the University of Chicago Brain Tumor Center, who helped staff the IBTA booth. Jean has written an article, “Brain tumor standard therapy and side effects: what the patient should know”, in this issue of Brain Tumour magazine.

Above left: A view of the patient advocates’ lounge which ASCO provides so that advocates can relax, meet others and attend special seminars Above right: The 2012 IBTA magazine included a special poster insert which was a timeline entitled “Progress Against Brain Tumors” and which was originally prepared for ASCO by Dr Susan Chang (centre). The timeline was reproduced in the IBTA magazine with permission from ASCO. At the Chicago meeting IBTA Co-Director Kathy Oliver (right) presented Dr Chang with a souvenir copy of the poster. On the left is Denis Strangman, Chair of the IBTA. The IBTA is hopeful that someone will volunteer to produce a similar timeline of progress for pediatric brain tumours for inclusion in the 2014 edition of Brain Tumour magazine, which we plan to distribute at the 16th International Symposium on Pediatric Neuro-Oncology (ISPNO) in 2014 in Singapore.


Above: IBTA Co-Director Kathy Oliver talks with Dr Denis Lacombe, Director,

Above: President of the European CanCer Organisation (ECCO) Professor

Headquarters, at the Brussels-based European Organisation for Research and

Cornelis van de Velde (right) and Michel Ballieu (left - ECCO Chief Executive

Treatment of Cancer (EORTC). The EORTC Brain Tumour Group has initiated

Officer) visited the IBTA display at ASCO 2012. They are pictured here with the

many international clinical trials for brain tumour patients.

IBTA’s Co-Director Kathy Oliver.

Above: Visitors to the IBTA display included Professor Martin van den Bent from

Above: Another visitor to the IBTA display at ASCO was Denis Goldenberg from

Rotterdam’s Erasmus MC - Daniel den Hoed Oncology Center in The Netherlands

New Jersey (USA) who wrote an article for the 2012 issue of Brain Tumour

(right). Martin is the former Chair of the EORTC Brain Tumour Group. Kathy Oliver is

magazine about his two children, Jake and Rachel, who both have juvenile

accompanied at the booth by MaryEllen Maher, an Advance Practice Nurse at the

pilocytic astrocytoma (JPA) brain tumours. In this issue of the 2013 magazine Denis

Northwestern University Feinberg School of Medicine Department of Neurological

interviews an Australian woman who has also had a similar experience. Sandra

Surgery. Together with Jean Arzbaecher, Mary Ellen helped staff the IBTA display

Prior’s two sons, Ethan and Daniel, were both diagnosed with brain tumours.

at ASCO 2012. One of the conditions for qualifying for a display is that it must be

Tragically, Ethan passed away in October 1999. Familial brain and CNS tumours are

staffed from 9 a.m. to 5 p.m. on each of the exhibition days and the IBTA is grateful

not unknown but they are very rare. Having one child diagnosed with a brain/CNS

to Jean and MaryEllen (both Chicago based) for helping us fulfil this responsibility.

tumour is extremely difficult but to have two is an immensely daunting challenge.

Brain Trekking in Hong Kong DR Danny Chan from the Chinese University of Hong Kong advised us that the hospital’s Brain Tumour Centre’s fifth

charity walkathon “Brain Trekking 2012” was held on Saturday, 10 March in Hong Kong. The walk started from and finished at the Peak Galleria. The website for the Walk, which used a colourful poster to promote it, explains that: “Brain Trekking is the Hong Kong chapter of a global awareness program, ‘Walk Around the World for Brain Tumours’, organised by the International Brain Tumour Alliance. The aim of the walk is to raise public awareness of and support for brain

tumour patients in the community. The total mileage of worldwide supporters will be accumulated with the goal to circling the world 5 times. Last year, over 300 walkers participated in the event including patients and their families. Together, we raised 1,150km in Hong Kong.” n Far left: The colourful poster advertising the 2012 Brain Trekking walk in Hong Kong

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The role and support of caregivers: we also ride the brain tumour roller coaster By Kathy Oliver Co-Director, International Brain Tumour Alliance and Patient Issues Section Editor, European Association of NeuroOncology Magazine “It’s like standing on the shore watching him out at sea. Sometimes the waves bring him back closer to me and sometimes the tide takes him away again.”

T

hese words, written by a caregiver, hauntingly capture the emotional ups and downs of looking after a person with a malignant brain tumour. Brimming with pathos, tinged with strain and symbolic of a journey that is unique in the atlas of diseases, these two simple sentences highlight the fact that caregivers also ride the brain tumour roller coaster. One of the most striking things about brain tumours is that, unlike other cancers, they intersect three major disease areas: cancer, neurological disease and rare disease. This triumvirate presents a huge challenge to both the patient and the caregiver.

Understanding the caregiver’s perspective The stresses resulting from a brain tumour diagnosis are significant and fairly welldocumented for patients. But the effects of this devastating diagnosis on the caregiver were historically not so widely understood or recognised. In recent years, however, there have been a number of studies focussing on the brain tumour caregiver’s role, especially with regard to high grade glioma. A team from the Department of Oncology at the University Hospitals in Leuven, Belgium, led by Wendy Sterckx, carried out a systematic review from the patient’s and 74

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Above: IBTA Co-Director Kathy Oliver, her husband Gordon and daughter Miranda were caregivers to Colin (the Olivers’ son) who passed away from a brain tumour in August 2011, having been diagnosed in 2004

caregiver’s perspectives on the impact of a high grade glioma on everyday life. The results were published last year (2012) in the European Journal of Oncology. 1 The review states: “Caregivers associate the diagnosis [of a brain tumour] with a loss of safety in daily life. Suffering and powerlessness loom large...Feelings of being overwhelmed, denial, anger and isolation are described. In an attempt to cope with the diagnosis, caregivers take every day as it comes and do not want to plan ahead. They try to prepare themselves for the worst and want to be ready for when the patient deteriorates.” This same Leuven review mentions that the patient’s cognitive and neuropsychiatric symptoms are the greatest challenges for caregivers. Furthermore, the paper quotes other studies - notably Fox and Lantz, Sherwood

et al, Janda et al and Schubart et al - when it reports: “[A brain tumour] is a family disease. Caregivers’ distress is reflected in burden and depressive symptoms, both related to the reduced independence and neuro-psychiatric symptoms of the patient. Compared with caregivers of other brain tumour patients, caregivers of patients with a glioblastoma have a worse quality of life and may have more psychosocial needs because the disease process is faster and they have less time to adapt.” A 2010 Australian study of high grade glioma brain tumour caregivers from a team in Perth pointed out that: “...Caregivers in this study reported experiences similar to those described by caregivers of people with other cancers. What differed for this group [of brain tumour caregivers] was the rapidity of change and the need for immediate information and support to assist with caring for a person with high grade glioma.” 2

Living the new normal After diagnosis, brain tumour patients and their caregivers must try to rebuild their lives and learn to live the “new normal”. For the caregiver this may include a major readjustment in family dynamics and roles. Caregivers may have to learn how to move and handle a patient, organise equipment, monitor and administer medications, become the family’s main transport person, oversee the patient’s personal care and help the patient cope with treatment side effects. Caregiving can be incredibly intense and extremely isolating. On the other hand, many caregivers have also said that the inspiration and courage shown by the brain tumour patient may bring them to a new level of deep love, admiration and closeness with the


patient. Time together is cherished in a way that it has never been before.

Caregivers and the IBTA survey The International Brain Tumour Alliance (IBTA) carried out a patient and caregiver satisfaction survey in 2010 which asked: “Was information about your diagnosis and prognosis provided to you in a considerate and sensitive manner and in a suitable physical environment?” Although 59% of those surveyed responded “yes”, a number highlighted less than satisfactory situations. They included a lack of compassion shown by medical staff, bad news being broken in inappropriate surroundings and a nihilistic attitude on the part of doctors. One respondent wrote: “We did not understand the terminal prognosis, it was not properly explained... [This was] harmful to the surviving partner as expectations were not properly set. The surviving partner is a ‘patient’ in this sense also, but is not treated as such. I think there is a need for counselling being given to the partnercarer in parallel with the treatment for the patient.”

Helping caregivers cope So what can caregivers do to help themselves cope on this journey? Information, befriending and support for caregivers is available from brain tumour charities. However, not every country is fortunate enough to have these organisations. A directory of brain tumour charities known to the IBTA is available at www.theibta.org/websitelinks.html A 2012 article in Brain Tumour magazine by Dr Martin Klein of the VU University Medical Center in Amsterdam says: “Research to date indicates that, while continuing to face significant caregiving stress, caregivers can benefit greatly from structured psychosocial interventions, leading to clinically significant improvements in the caregiver’s quality of life.” 3 We at the IBTA have seen that it may be useful for families, if they wish, to be paired in a buddy system with other families on the same journey so there is peer-to-peer support. This is something that brain tumour patient support groups often facilitate. But unfortunately, not all

families are put in touch with these groups by clinicians at the time of diagnosis. Some neuro-oncology departments run their own support group meetings which facilitate such introductions. In many cases, it is the specialist neuro-oncology nurses who run these groups. Klein also mentions the use of “...E-Communities by which caregivers are connected to their peers... over the Internet.” There are, in fact, a number of highly regarded, reliable web resources for brain tumour caregivers. Used by patients and caregivers worldwide, the US-based Musella Foundation’s website - www.virtualtrials. com - houses a section on survivors’ stories which can help give people hope. The website also hosts a number of excellent online discussion groups where patients and caregivers can find information, support, friendship and understanding. The Cancer Institute New South Wales (Australia) website features an excellent set of 16 brain tumour fact sheets and 11 resource sheets. These cover topics such as anger management, stress, concentration, communication and fatigue, and are not just aimed at the brain tumour patient but at the caregiver as well.

alleviate some of the nightmarish aspects of the brain tumour journey. As Dr Jerome Groopman, a leading cancer researcher, said: “Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion. …hope gives us the courage to confront our circumstances and the capacity to surmount them.” 4 n Notes: 1. Sterckx, W., et al., “The impact of a high-grade glioma on everyday life: a systematic review from the patient and caregiver perspective”, European Journal of Oncology Nursing (2012), doi:10.1016’/j.ejon, 2012.04.006 2. McConigley, R., et al., “Caring for someone with high-grade glioma: a time of rapid change for caregivers”, Palliative Medicine (2010), 24/(5) 473-479 3. Klein, M., “Caregiver burden in relation to a brain tumour diagnosis”, Brain Tumour (2012), International Brain Tumour Alliance, 58-59 4. Groopman, J, The Anatomy of Hope (2004), Random House, xiv

Reprinted with kind permission of the European Association of NeuroOncology Magazine: EUR ASSOC NEUROONCOL MAG 2013; 3 (1) 31-32. As well as a regular patient issues column, EANO’s official online magazine contains peer-reviewed articles and reviews, case reports, congress reports,

Lessons learned

letters, and society news and announcements

There is no exact science to caregiving. It seems to hover somewhere between treading on eggshells, juggling dozens of balls at once and having unlimited reservoirs of physical and mental strength. As one of the caregivers to our son Colin for over seven years, until he died in August 2011 from his brain tumour, I learned many lessons. I learned that caregiving must be a partnership so that the patient can make his or her own decisions and choices as much as possible in order to feel that they are still in control. I learned that it’s also vital not to forget the needs of other people in the family; to accept help from relatives, friends and neighbours when they offer it; to maintain continuity and as much of a sense of normality as possible. Finally, I learned that the hope and encouragement you give as a caregiver to the patient can go a long way in helping

from around the world with a special focus on Europe and the EANO Member States. To view the entire, free-access EANO magazine, please visit http://www.kup.at/journals/eano/index.html

From the IBTA E News November 2012 Cell phones and brain tumours: There was publicity during October about an Italian Supreme Court decision that cell phones cause brain tumours. In a commentary on the decision the Atlantic magazine claimed “the decision was based on the case of a man who made work-related calls on his cell phone for six hours a day for twelve years” and who developed a neuroma. n

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Can lightning strike twice? By Denis Goldenberg Denis is the father of two children with juvenile pilocytic astrocytoma in America who here interviews Sandra Prior, a mother of two children with brain/CNS tumours (one of whom has passed away) in Australia. Sandra was born and raised in Newcastle, New South Wales. Denis Goldenberg lives in New Jersey, USA.

Editor’s note: In the 2012 edition of ‘Brain Tumour’ magazine we published the incredible story of two children from one family in the USA who had each been diagnosed with a juvenile pilocytic astrocytoma (JPA) a brain/CNS tumour. We arranged for the author of the 2012 article (Denis Goldenberg) to interview a woman in Australia (Sandra Prior) about her similar experiences. Familial brain and CNS tumours are not unknown but they are incredibly rare. Having one child diagnosed with a brain/CNS tumour is extremely difficult but to have two is an immensely daunting challenge. Perspectives

One father’s JPA journey with his two young children By Denis Goldenberg, New Jersey, United States

S

omeone who has never experienced brain tumors or cancer would see this story as horrible. However, a family with a child undergoing chemotherapy and radiation - or worse, whose child has succumbed to a brain tumor - would view this story as having a happy ending. It all depends on your perspective how cancer has affected you. This is our family’s story. We live in New Jersey (USA) and have three children, two of whom have juvenile pilocytic astrocytomas (JPAs). JPAs are commonly described as “benign” tumors. But what is “benign” about a growing tumor embedded in a child’s brain or spinal cord? Technically, these low grade tumors do not harbor the ability to metastasize (spread to other parts of the body), but they do inflict damage locally, growing and impinging on critical parts of the brain or central nervous system, often affecting vision, swallowing, speech, balance, headaches, sleep, or any combination of these. JPAs have been discovered by happenstance in adults. This has occurred when scanning for a head injury, and inadvertently discovering a dormant JPA that has existed in the adult’s earlier years, and poses no problem today. Jake is diagnosed with a JPA One such active tumor was discovered in my son Jake, who was an otherwise happy and active four and a half year old boy at the time. A drooping right eye and left-sided weakness caused us concern so we sought advice on why this should be happening. Jake was misdiagnosed by two separate ophthalmologists as having “Duane’s Syndrome”, a condition which causes the muscles controlling the

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Above: Brother and sister, Jake and Rachel Goldenberg

movement in one eye (or in some cases, both eyes) to contract involuntarily and move the eye inward or outward on its own. The second diagnosis was the same, and the recommendation was eye surgery. Before undergoing surgery, my wife and I took Jake to a neuro-ophthalmologist who, in a matter of minutes, determined Jake had a “third nerve palsy” or something which causes one of the nerves to the eye to tell it to move. An MRI was needed immediately, as this doctor suspected something sinister even before the scan would confirm it. The MRI the following week stunned us. It revealed that our boy had a ping

pong ball-sized lesion at the midbrain pressing on the hypothalamus. After about ten weeks of chemotherapy, another MRI was performed. This time, the scan showed that chemo had not made a dent in the tumor, but there was actually some additional growth. What was previously considered a risky surgery to the middle of the brain - to be reserved as a last resort was now required. While neurosurgeons had differing opinions on how and if to do surgery, ultimately an approach behind the ear and through the right lobe was taken. Due to the encapsulation of the tumor, the pediatric neurosurgeon was able to remove 90% plus of the tumor, which

Brain Tumour

IN 1967 - at opposite sides of the globe, 9,000 miles apart - two girls were born. Throughout their childhoods - one growing up in Australia and the other in the United States - they never knew the common path they would travel after becoming mothers. Both women had three children, and both had a child at about the same time as the other. Neither of these factors are uncommon events. However, what proved to be extremely rare was that two out of the three children in each of these families had brain/CNS tumours. Remarkably, and to add to the coincidence, each of the two children with brain tumours in each of the two families was diagnosed at about the age of four. Among pediatric cancers, brain tumours are one of the more common types, with leukemia being the most common. However overall, brain tumours among children are 76

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Above: Sandra Prior, from Australia, with her son Daniel in May 2008. Daniel, her third child, is her second child to be diagnosed with brain tumour, her first child Ethan (born in 1994) having passed away from a brain tumour in October 1999

not that common. Cases of siblings with brain tumours are practically non-existent, with the exception of a hereditary condition called neurofibromatosis, or “NF” for short. While multiple cancer cases among relatives are thought to be of either genetic or environmental causes (with more genetic factors being discovered and better defined over time), some cancers are excluded from suspicion of environmental links. The less aggressive brain tumours, like juvenile pilocytic astrocytomas (JPAs), which my two children have, fall into that category. When JPAs are found to be familial in nature, it is because they are neurofibromatosis (NF)-related but that’s not the case with my family nor in Sandra’s family as far as we know. But in a moving interview, Sandra told me about her two brain tumour journeys with her young sons.

DG: Sandra, could you tell us about your children - when they were born, how they developed and what kind of symptoms started to appear? SP: My three children were born in 1994, 1996, and 2003. Ethan was my first child. He had a normal gestation but a difficult birth as he had an unusually large head. It was 40cm at birth. He experienced difficulty in walking and showed low muscle tone from six months old. He had difficulty reaching all of his childhood milestones, so he was tested for known syndromes and genetic disorders, but no cause for the problems was found. It was thought that because of his larger than normal head size he had ‘slow wiring’ to his brain. This was pretty much what the neurologist at the time stated. Ethan attended an early intervention centre with the involvement of physiologists, paediatricians, and neurologists, and even had a CT scan at 18 months old. Everything suggested low muscle tone and just a ‘developmental delay’. DG: When did you first notice symptoms of a brain tumour with Ethan? SP: By the time Ethan was four years old, I felt he was not progressing as I would have hoped. It was suggested his change in movement was just ‘growing pains’ or his muscles adjusting to his rapid growth. He was a tall boy and off the development charts for height and weight. This however was to be expected as his father was over 6ft tall and I am 5ft 10. After much pushing on our part, his doctors agreed to an MRI in 1999. The MRI immediately confirmed that Ethan had a large mass, which to me looked on the MRI like a big hole right in the middle of his head. This tumour was immediately


Above: Ethan Prior, age nine months - happy and healthy

deemed ‘inoperable’. They told us it was a death sentence and that Ethan had weeks or only maybe months to live. It was too hard to comprehend this devastating news. For me, it was almost a case of willing it out of his brain. A neurosurgeon in Sydney was contacted. She thought the tumour was inoperable but consulted a team of neurosurgeons in Sydney at The Prince of Wales Hospital, who decided to try to remove the tumour. In May 1999, Ethan had his first resection. It was ten hours long, and apparently they had difficulty reaching the tumour due to his large head size. However, the operation was declared a success and some tumour was removed. Ethan came home briefly at the end of May 1999. However, he developed fluid on the brain after the resection and returned to Sydney for more surgery that next month. A shunt and central line for later chemotherapy were installed. This was followed by six weeks of stereotactic radiation at the Sydney Children’s Hospital/Prince of Wales every day for six weeks. Ethan also had two doses of chemotherapy. During that time, from May to September of 1999, we pretty much lived in Sydney at Ronald McDonald House Randwick, 200km from our home, away from Ethan’s sister Emma, who was 18 months younger. After a clear MRI in Sydney on 20 September 1999, Ethan was given a clean bill of health (or as much of one as

could be expected). We all traveled back home, and the very next day Ethan had a seizure. He was rushed by ambulance to our local hospital in Newcastle where he immediately had another MRI. This MRI showed complete demyelination (damage to the myelin sheath of neurons) of his entire brain. It was unheard of. The doctors said they had never seen complete demyelination of a brain before, partly because the MRI technology was relatively new in 1999. It was thought that an infection had entered Ethan’s system via the central line. This is the same central line that I demanded be removed before leaving the Sydney Hospital since I worried about the potential for infection, but I was told it was needed for chemotherapy treatment further down the track. After all his treatment, Ethan’s body just couldn’t fight this infection. He spent six weeks in the Intensive Care Unit until it was decided to turn off his life support system on 25 October 1999. DG: That is such a tragedy and must have been extremely difficult to endure, especially for you and your ex-husband. How do you cope? SP: Everyone tackles the threat of cancer in their own way. Some women get both breasts cut off, some people eat healthier, some keep smoking a pack a day. I believe it is life’s little lottery and it - death in any form - will happen no matter what you do. So don’t be pessimistic. Just live each day, make the most of what you do have but of course do all you can to give yourself the best chances in life. I try not to dwell on it. You just try to move on and take each day as it comes. DG: Your second child is a girl who developed normally and didn’t have cancer. Could you tell us about Daniel, your third child? SP: Daniel was born in May 2003, after an uneventful pregnancy. He had a bit of trouble at birth however, as he had cord entanglement around his neck. However, he didn’t seem to suffer and all appeared to be fine. He was average birth size, weight, head circumference, and height - everything as normal and average as could be. Daniel has had a normal development and was actually advanced

Above: Ethan and his sister Emma, Christmas 1998. This was just four months before Ethan was diagnosed with his brainstem astrocytoma. There is no obvious sign of the tumour and yet it was well established by then. Ethan was actually the best, health wise, he had ever been and was ever to be

and very intelligent right from the start with a curiosity and eagerness to learn. Four years passed and at Christmas 2007, we noticed an irregular twitch in Daniel’s left eye. It was barely noticeable. Since we took lots of Christmas photos that day, we could just barely notice a squint in the left eye. In early 2008, I took Daniel to the doctor who wasn’t concerned. The eye squint wasn’t constant. My family said straight away it was just like Ethan; everyone else merely thought I was paranoid. After several more visits to the doctor, an appointment was obtained with the same neurologist who had seen Ethan years earlier. He said it might be ‘Bells Palsy’ or similar but it couldn’t possibly be a brain tumour. Given our history, however, he decided to do an MRI just to rule this out. When I was given the results of the MRI, the neurologist (a different one) said to me: “You know what you’re here for - it’s a brain tumour.” So unbelievably we started all over again. Another inoperable brainstem tumour! The biopsy indicated that the “posterior fossa brainstem showed low grade glioma --grade II”. It was deemed too risky to resect. It was decided that six weeks of stereotactic radiation was the best treatment plan. So again we headed down to Prince of Wales Hospital in Sydney to see the oncologists and radiologists who  Brain Tumour

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Above: A photo of Daniel taken at Christmas 2007 which shows the change to his eye

had treated Ethan nine years prior, and we prepared for radiation. Recalling Ethan’s treatment and its effects, I was extremely reluctant to go down this road again. At the same time, we had heard of neurosurgeon Dr Charlie Teo but were not sure he would be able to operate on Daniel. The tumour had already been deemed inoperable by six doctors: a local oncologist, local neurosurgeon, radiologist, second opinion neurosurgeon and GPs. Basically, everyone who was guiding me said: “Do not operate. He will be a vegetable.” These were the exact words they all said. Dr. Teo has a reputation as a skilled and very experienced neurosurgeon. But every single other medical professional we saw advised against an operation as they felt it would be too risky. Yet we were also told that Daniel had only weeks to live, even with radiation.

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Daniel’s father, Peter, and I went to see Dr Teo in Sydney. On looking at the MRI he confidently said he could remove the tumour. Just like that! Dr Teo said to trust our gut feelings, our instincts and that we could trust him. When you have been around hospitals as long as we had, it’s sometimes hard to find real trust and real hope. So this was very difficult for me. Did I want to put Daniel through unnecessary pain and suffering when we had been told death was imminent? I had seen with Ethan that ‘quality of life’ would have been preferable. We had only days to make a decision. Radiation was due to start, so a decision had to be made. I decided to go with the surgery. If Daniel was to die I felt I could not live with myself if I hadn’t taken every bit of hope and tried my best. I also thought to myself that if Daniel was paralysed he would at least still be alive. Dr Teo operated on Daniel in September 2008. Surgery only lasted about three to four hours. In comparison to Ethan’s it went very quickly. Dr Teo said he could clearly see the tumour tissue from normal tissue and was comfortable that he had taken out all that he could. Daniel spent only three days in the intensive care unit and had very little movement. He had right-sided weakness, and left 6th and 7th nerve palsy. But the brain swelling went down and he could

Above: Daniel, Feb 2011, age eight

move a little more every day. About five to six weeks after surgery, Daniel came home. He was in a wheelchair for several months and gradually got his muscle strength built back up to being able to walk again. This surgery was successful. Daniel has a ‘brain injury’ now - muscle weakness, facial palsy, his left eye and left ear no longer work. But Daniel has a good quality of life and can do most things he puts his considerable determination to. He is happy. I am unsure as to whether the tumour was classified as malignant or not. One report said “Grade 2” then it changed. Whatever it was, it was going to be terminal if left as it was growing rapidly within his brainstem. It was almost identical to Ethan’s. n

Conclusion by Denis Goldenberg:

A final comment from Sandra Prior:

The science of identifying and defining familial conditions associated with brain tumours will continue to advance. New information may not be relevant for the children of the immediate Prior and Goldenberg families, but may be so for their cousins, and for those families who experience this in the future. Should a discovery be made which provides the capability to know which families harbor other genetic pre-dispositions to brain tumours like these, along with this capability will come many dilemmas. For instance, once a child is diagnosed with a JPA and found to have a familial condition, how do we best screen his/her siblings for these tumours? Beginning at what age? How frequently? At what age can the scanning end, allowing for that “sigh of relief”? What if a static JPA is detected and there are no symptoms? What, if anything, should be done? Finally, how much do we want to know in cases where many children will never develop these tumours at all?

Everyone who hears a story of two siblings with the same tumour almost immediately assumes a hereditary condition or connection. The specialists here in Australia have said it is either hereditary, environmental (I have not moved house for 25 years) or bad luck. Perhaps it is a genetic weakness or predisposition triggered by an environmental factor which is bad luck! Hopefully, future medical research and advances will be able to find the triggers for these and similar tumours. In the days before MRI technology, some childhood deaths were probably incorrectly diagnosed as meningitis or encephalitis when there may have been a brain tumour death in the family which had not been accurately recorded. People should be aware of the signs and symptoms of brain tumours and be proactive in seeking medical advice and MRIs.

Brain Tumour


When in Rome rocking, running and walking for brain tumours Dr Andrea Pace of the Neurology Unit at the National Cancer Institute Regina Elena, in Rome, Italy, advised the IBTA that he and his associates again held a commemorative run/walk for Corri Al

Left: The colourful poster advertising the 2012 Corri al Massimo per Irene run/walk event in Rome

Above: Participants at the Rome 2012 Corri al

Above: During the 2012 International Brain

Massimo per Irene run/walk

Tumour Awareness Week, a rock concert was held in Rome in memory of brain tumour

Massimo Per Irene on Saturday, 26 October 2012, at the time of the International Brain Tumour Awareness Week. It was the fifth edition of the run/walk and almost 200 people participated in the event in memory of Massimo Crocco, a brain tumour patient and runner who passed away some years ago. Nearly 2000 Euros was collected from this activity for IRENE Onlus, the association of patients and families that supports home care for brain tumour patients in Rome.

patient Giorgio Sanna, a guitarist

On the same day, a concert was held in memory of Giorgio Sanna, a young brain tumour patient who died three years ago and who played guitar in a rock group. A scientific meeting on “Home care in neuro-oncology and in other diseases� took place on October 25th, preceding the run. n

Celldex is pleased to support the IBTA in its mission to provide information, encouragement and hope to brain tumor patients worldwide.

celldextherapeutics.com

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Imagine a world where children don’t get cancer By Patricia Blanc Founder and Chair of Imagine for Margo, France

Above: “Imagine for Margo” organized their first ever run/walk event called Children Without Cancer (Enfants sans Cancer) which was held in Paris in September 2012. There were 600 runners/walkers who together raised Euros 203,000 to help fund a European clinical trial for low grade glioma. (Front row, left to right: Pr Gilles Vassal, Anne Lewandowski, Patricia Rougeaux, Dr Nathalie Gaspar, Patricia Blanc, Maddy Malaise)

I

magine for Margo is a new French association, created at the end of 2011 after my young daughter Margo died from glioblastoma (GBM) in June 2010. She was 14 years old when she passed away. After Margo’s death, we discovered a message she wrote which said: “Go Fight - Win. Go - take the opportunities that come to you and do not miss a chance to follow your dreams. Fight against all the hard moments that will eventually come to you. Win - accomplish 80

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the things you want, follow your dreams and always try to be a better person.” “Imagine for Margo” wants to convey this message of life, and continue Margo’s fight so that one day our dream to cure all children with cancer becomes a reality.

Why Imagine for Margo? Before Margo was diagnosed with a GBM I had never been involved in cancer or any medical subject. I was working in an international bank and I had lived for

three years in South Africa and seven years in New York. I worked in investment banking. Now I work in human resources and talent development in international retail banking. “Imagine for Margo” is now a big part of my life and it is my goal in life to help other children with cancer and their families. I cannot imagine not doing this work. “Imagine for Margo” gives me a lot of satisfaction. I am learning a lot about research and new drugs development, international collaboration, and also about marketing, communication and events organization. I believe that my previous work experience in international cooperation and projects helps me to understand the pediatric cancer community and also adds value to what I do now. During Margo’s brain tumour illness we realized that in France 2000 children are diagnosed with cancer each year and 500 die. One child in every 440 will be diagnosed with cancer before the age of 15. We also discovered that there are very few innovative treatments and many more clinical trials in the USA than in France or in Europe. At one stage, we learned that Margo’s doctor was doing an analysis of high grade gliomas in children but needed funds to analyze samples of tumors still in the freezer for the last three years, due to lack of money. Margo decided to raise a call and managed to collect Euros 103,000 to donate towards this important work. Thanks to this donation, the analysis was finalized and critical oncogenic mutations were identified offering a therapeutic target at initial diagnosis in this devastating disease. This contributed


to a major advance in newly diagnosed pediatric diffuse intrinsic pontine glioma (see publication in Pediatric Blood Cancer, 2012, Critical oncogenic mutations in newly diagnosed pediatric diffuse intrinsic pontine glioma. Cloé Louys IGR et Pediatric Blood and Cancer 2011 Dec 20, http://www.ncbi.nlm.nih.gov/ pubmed/22190243).

such as those organized by the Biotherapy Development Association (BDA) and the International Society of Pediatric Oncology (SIOP). As I already mentioned, I also spoke at the European Parliament. All of these things happened within the first year of our association’s creation!

Our challenges and achievements

We donated our walking mileage to the Walk Around the World for Brain Tumours

The biggest challenge of our work at “Imagine for Margo” is to understand the medical, legal and collaborative aspects of drug development and to be accepted in this new environment. It is also a big challenge for me to speak about Margo and our family’s story in front of a large audience, as I did at the European Parliament in February 2012. But I find the courage to do this because I truly believe that it is vitally important to carry out advocacy work and help research achieve specific, innovative and more efficient treatments for children and adolescents with cancer. I think our greatest achievements to date at “Imagine for Margo” have been to raise nearly Euros 300,000 for research against pediatric cancer; to have signed a partnership with the European network “Innovative Therapies for Children with Cancer” (ITCC) which includes 42 European research institutions working on cancer in children and adolescents; and to have participated in international congresses

In addition, “Imagine for Margo” organized our first ever run/walk event called Children Without Cancer (Enfants sans Cancer) which was held in Paris in September 2012. Each of the 600 runners/ walkers had to collect at least Euros 200 to participate. Altogether, everyone raised Euros 203,000 and this funding has helped start a European clinical trial for low grade glioma, the most common pediatric brain tumor. One hundred and fifty children will participate in this clinical trial which will take place in six European countries. And of course, we donated the walking miles from Enfants Sans Cancer to the International Brain Tumour Alliance’s “Walk Around the World for Brain Tumours”. The second Enfants Sans Cancer run/ walk will take place in Paris on September 22nd, 2013 and we hope to gather more runners/walkers and raise even more money to start another clinical trial (still being discussed with researchers) and donate even more miles to the “The Walk

Below: Some of the 600 participants in the Imagine for Margo run/walk event

Around the World for Brain Tumours”. I must say that with my full time job and being Chair of “Imagine for Margo”, I do not find much time to relax but I practice running and ran the Paris half marathon on March 3rd of this year. n For more information about Enfants Sans Cancer, please see www.enfantssanscancer.com For more information on “Imagine for Margo” see www.imagineformargo.org You can also join “Imagine for Margo” on Facebook and Twitter.

From the IBTA E News October 2012 Cancer caregivers: In a paper presented at the recent ESMO conference researchers reported on a number of statistically significant impairments experienced by people who cared for cancer patients compared with noncaregivers. Dr Isabelle Gilloteau from BMS told the IBTA E-News that the analysis did not deal with brain tumour caregivers specifically. It is an area worthy of further study, particularly if it can be shown that a new therapy which results in a better quality of life for a brain tumour patient also consequentially results in less impairments suffered by their caregivers. Some of the more forward-looking Health Technology Appraisal Agencies (HTAs) might be prepared to take that factor into consideration in their assessments. n

Free bulk copies of this magazine are available to organisations on a shared freight cost basis. Contact kathy@theibta.org

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Annual Art Festival and Family Day marks International Brain Tumour Awareness Week in Mumbai, India

BRAIN Tumour Foundation of India (www. braintumourindia.org) celebrated its Annual Art Festival and Family Day on 3rd November 2012 at Tata Memorial Hospital, Mumbai (Choksi Main Auditorium) as a part of IBTA’s International Brain Tumour Awareness Week. Here are some photographs which illustrate the event. More than 250 families from around 82

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the country attended the function and participated with enthusiasm in the traditionally-held Art Festival and fancy dress competition. Children also presented a brief but touching cultural programme. A magic show was followed by the screening of the year’s most delightful award winning children’s film, “GATTU”. Rajan Khosa, the film’s director and

other popular television artists including Dayaben/team, and Mr Sanjay Dutt (senior Congress leader) were the guests of honour and interacted freely with the families with words of support and encouragement. We thank the IBTA for the wonderful initiative of the International Brain Tumour Awareness Week, and extend our full support. n


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“In the end it´s not the years in your life that count, it´s the life in your years.”* (*Attributed to Abraham Lincoln)

By Petra Hoogendoorn The Netherlands

Above: The van den Heuvel family, December 2010. From left to right: Chris, Thijs, Petra, Richard and Simone. Photograph by Rosalie Mijnheer

THIS is my family. In the photograph are my late husband Richard who died in February 2012, and our three children, Chris, Simone and Thijs. This picture was taken in December 2010, a year after Richard was diagnosed with a large grade two bi-frontal astrocytoma. Severe headaches and his leg failing to function lead to the diagnosis. In that year he had surgery to remove part of the tumor tissue; eight months of chemotherapy and a permanent drain implanted to deal with intracranial pressure when it suddenly became life threatening. 84

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A few days after the picture was taken Richard started radiotherapy. More treatments we could not yet foresee were to follow. Surgery removed the physical problems that Richard had when he was diagnosed. However, the treatments and disease progression quickly resulted in cognitive and behavioral problems. The latter caused by far the most difficulties on a daily basis, first in family life and later in Richard’s working life as well. We knew he did more than his utmost and tried to make the most of a difficult to later impossible situation.

Looking back we can unfortunately see to what extent Richard being diagnosed with a brain tumour caused us to end up in survival mode, from which we’re now still recovering. Richard’s main concern was that our children would have to live with a father who wasn’t the father he wanted to be nor the father he used to be. This created experiences and memories of a kind Richard never wanted.

Making the most of our time together as a family Within the first week of diagnosis we, as a


this project afterwards. All of us who were there that night at the street dinner as either organizers and/or guests still treasure the memories of that evening.

Cognitive rehabilitation app and quality of life monitor

Above: A fund raising dinner for 850 people, ‘t Hoofdgerecht’ in September 2011, Middenstraat Weesp, The Netherlands. Photograph by Jorrit ‘t Hoen

family, decided to make the most of what we knew to be a fight we could not win. Abraham Lincoln, the 16th President of the United States, said: “In the end it´s not the years in your life that count, it´s the life in your years.” This became one of our mottos. We created the kind of memories we wished for our children. Within a week of Richard’s diagnosis we had a party for 100 friends to celebrate his recovery after surgery. We tried to cut back the graveyard emotions around us. Two months later Richard and I got married in a very special private bush lodge in our beloved South Africa. A then newborn giraffe, who we were the first to see, still walks around carrying Richard’s name (looooong may he live!). Our eldest son had the night of his life accompanying a soccer player in a Champions League game starring Amsterdam soccer club Ajax. And together with over one hundred neighbors we organized a street dinner for 850 people to raise money for Dr Karin Gehring’s and Professor Margriet Sitskoorn’s award-winning research in cognitive rehabilitation to be made available to patients worldwide via an “app”. The bottom line result that night was a stunning Euros 22,000 raised. The Dutch Care Insurance Innovation Fund contributed over Euros 200,000 to

The app is designed to be used by brain tumour patients to improve memory, concentration and planning skills using a combination of a game and compensation strategy training. We’re now in the design phase of the app. We’re figuring out - using the latest knowledge and patient participation - how to maximize performance, using film, text, exercises and sound. We’re also looking at whether or not to include a role for the caregiver, neuro oncology nurse or online coach. These choices will have an effect on current and future costs of the app. We’ll have to assess how to make it economically viable on a country-by-country basis. Help and advice about this would be gratefully received. Dr Karin Gehring (neuro-psychologist), Dr Jaap Reijneveld (neuro-oncologist) and I took a demo of the app to the Society for NeuroOncology (SNO) conference in Washington D.C. in November 2012. We hope to present the finalized Dutch and English versions during the next SNO conference in San Francisco in November 2013. I´m proud to be working on this project and cooperating with Tilburg University neuro-psychologist Karin Gehring and Amsterdam VU University Medical Center neuro-oncologist Jaap Reijneveld. I´ve joined the international cancer patient advocate group of Inspire2live which rightfully promotes researcher, clinician, patient and caregiver collaboration to further enhance quality of life for patients and loved ones. I feel fortunate to have met a lot of very dedicated professionals in the field of quality of life and am excited about my next project. I’m looking into the possibilities of a quality of life monitoring tool for patients and families. The benefits of this would be to provide current data on quality of life of both the patient and other family members; enabling more effective treatment decisions; and providing better quality of life interventions for the patient and family I believe we can use knowledge which is already available from many institutions and medical professionals for the benefit of

Above: From left to right: Dr Karin Gehring (neuropsychologist), Dr Jaap Reijneveld (neuro oncologist) and Petra Hoogendoorn, January 2013. Photograph by Dr Martin Klein (neuropsychologist)

Above: Left to right: Petra Hoogendoorn and IBTA Co-Director Kathy Oliver at SNO 2012 in Washington D. C. (USA)

all patients and all caregivers - that is what we’re advocating at Inspire2Live. Let’s not reinvent the wheel and let’s not make it any worse than necessary. Losing a great father, husband, son, brother, friend, neighbor, colleague is bad enough.

Richard’s legacy Richard’s life ended after 40 years. Exactly twenty years after our first kiss I used part of his ashes to help a magnolia butterflies tree flourish. The tree was planted on the day he would have turned 41, at the heart of a ‘happiness bench’ carrying 80 positive truths, lyrics and the like, including Lincoln’s quote. The bench was designed and created by artists Loes ten Anscher and Hilbert Tjalkens with a little help from the four of us. Richard’s memorial is in a sunny spot at the end of the street he loved to live in, in the neighborhood playground where we hope to organize a concert for one thousand people later this year or next year, featuring our favorite bands, once again raising money for quality of life while creating lifetime memories. n Brain Tumour

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Brain tumor standard therapy and side effects: what the patient should know By Jean Arzbaecher, Advanced Practice Nurse - CNS University of Chicago, USA

MANY factors determine how a brain tumor is treated. Factors include whether the tumor arises in the brain or comes from tissues outside the brain; tumor location; microscopic characteristics of the tumor cells; and overall health of the individual. An individualized treatment plan is recommended based on this. Treatment generally consists of some combination of surgery, radiotherapy, chemotherapy and supportive medications.

Surgery Surgery is the first treatment for most newly diagnosed brain tumors. Surgery establishes a tissue diagnosis, and decreases the volume of tumor to relieve symptoms. Decisions about type and extent of surgery are based on the size and location of the tumor, and the inherent risk of the operation. If a surgeon determines reduction in the volume of the tumor is too risky, a biopsy may be done to determine diagnosis. The amount of tumor removed ranges from a sub-total resection (partial removal) to a gross total resection (removal of all the tumor that the surgeon can see). Surgery for brain tumors carries certain risks which should be discussed with the surgeon. These risks may include bleeding, infection, brain swelling, seizures, neurological difficulties, wound healing complications, spinal fluid leakage, and fluid collection under the skin. In some cases of benign or slow growing tumors, surgical resection is the only treatment indicated. However, in higher grade tumors, microscopic tumor cells remain that the surgeon can’t see, and additional therapy is often recommended.

Radiation therapy Radiation therapy is often recommended as a treatment to stop or slow the growth 86

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Above: Jean Arzbaecher, RN, MS, APN-CNS, CNRN (right) and Kathy Oliver (Co-Director, International Brain Tumour Alliance) at the IBTA’s display booth at the American Society of Clinical Oncology (ASCO) meeting in 2012

of brain tumors, or to alleviate symptoms related to the tumor. Radiation therapy works within tumor cells by damaging their ability to multiply. Radiation affects both normal cells and tumor cells, however healthy cells repair themselves more quickly and completely than tumor cells. New radiation techniques allow physicians to administer the maximum amount of radiation to the tumor from several different angles while causing the least amount of damage to healthy cells. Various methods of radiation therapy for brain tumors are possible depending on the tumor type, number and size. Whole brain radiation may be needed if there are several brain tumors in different areas. Stereotactic radiosurgery (SRS) works to deliver a pinpoint dose of radiation to a defined area from many angles. Primary malignant brain tumors often utilize focused

radiation therapy which is aimed directly at the tumor plus a margin around the tumor. Intensity modulated radiation therapy (IMRT) is computer controlled radiation that shapes the radiation beam to the specific tumor area while contouring normal structures to be avoided. This radiation is usually given in the outpatient setting, and gives fractions (doses) of 2 gy (a “gy” or “gray” is a unit of radiation dose) per day. Thirty fractions are usually given over six weeks. Each session lasts only a few minutes, and is painless. Most people have some side effects from radiation therapy. Common side effects that occur during radiation are fatigue, hair loss, skin irritation, decreased hearing or a feeling of ear fullness, headache, nausea and worsening neurological symptoms due to brain swelling. These effects will usually resolve one to two months after the completion of


radiation, however some of the hair loss may be permanent, and a change in the texture or color of the regrowth may occur. Long term side effects of brain radiation include some mild cognitive changes such as short term memory loss and difficulty concentrating. Radiation necrosis due to cell death may develop months or years after radiation, and is not always related to the dose or volume of radiation. Radiation necrosis mimics brain tumor in both signs and symptoms and on MRI or CT scans. A biopsy may be indicated to distinguish between the two.

Chemotherapy Chemotherapy is often recommended both during and after radiation to control higher grade tumors. Occasionally, in lower grade tumors, chemotherapy is offered as an alternative to radiation in people with newly diagnosed tumors. Chemotherapy controls tumor growth by impairing tumor cells’ ability to divide and give rise to additional tumor cells. Other drugs can deprive the tumor of its new blood vessel formation, thereby starving the tumor of the nutrition it needs to grow. There are many different chemotherapy drugs that are given to people with newly diagnosed or recurrent tumors. The two most common medications are temozolomide and bevacizumab. Temozolomide is prescribed in the newly diagnosed setting. It works by interrupting the DNA of the cancer cell, making it less able to reproduce, which in turns slows or stops cancer cell growth. It is an oral medication, which is usually taken daily during radiation, and then in cycles of five days of every 28 for six to twelve months. Possible side effects are nausea and vomiting, lowered blood counts, constipation and fatigue. The side effects of nausea, vomiting and constipation are easily controlled by medication. Bevacizumab is used for recurrent tumors. It works by blocking blood vessel formation in brain tumors, which stops or controls tumor growth. It is given intravenously every two to three weeks. Possible side effects are high blood pressure, delayed wound healing, hoarse voice, excessive protein in the urine and abnormal bleeding. There are many other chemotherapies that may be prescribed for the treatment of recurrent brain tumor. There are also

opportunities to participate in a clinical trial for either newly diagnosed brain tumor, or at recurrence. These involve either new drugs, or drugs that are approved for other types of cancer.

Side effects of brain tumors Individuals with brain tumors can experience many effects from the tumor itself as well as from the treatment. These can include neurological difficulties, edema (brain swelling) and seizures. Neurological symptoms are dependent on the type, size and location of the tumor as well as the treatment. Symptoms may include weakness, sensory problems, speech difficulties, impaired vision and/or hearing, behavior and cognitive changes. Edema can occur during all phases of brain tumor treatment. It is most prominent in the immediate postoperative period, during radiation therapy, and in recurrence. It is evidenced by headache and focal neurological deficits.

Corticosteroids Corticosteroids are used to reduce this edema, and improvement in symptoms is usually seen within 24 hours of administration. Dexamethasone is the corticosteroid used most often, and has several adverse effects which are often dose and time dependent. Approximately half of patients will experience at least one adverse effect with dexamethasone, however these effects resolve after the medication is stopped. Adverse effects include behavior and mood changes, weight gain, fluid retention, elevated blood glucose, heartburn and muscle weakness. Decreasing or eliminating the corticosteroid dose is crucial in managing adverse effects. Because the body stops producing steroids when they are given orally, therapy should be tapered rather than stopped abruptly or serious side effects may occur.

Seizures A seizure is an event caused by abnormal electrical activity in the brain. It usually lasts only a short amount of time, and may manifest as unusual movements, decreased consciousness, and/ or sensory distortions. Seizures are common in people with brain tumors due to the tumor itself, brain irritation from the tumor and treatment, edema, or scar tissue. Twenty per cent

of individuals with a brain tumor present with a seizure, and fifty per cent have a seizure at some point in their illness. There are many different types of seizures depending on which area of the brain has the abnormal electrical signals. Many patients with brain tumors are on medications to prevent or control the seizures, even if they have never had a seizure. The treating physician makes this decision based on location and size of tumor, tumor type, and previous history of seizures. Side effects from the medication may include rash, decreased blood counts, drowsiness, or personality changes. If someone has a seizure, the following are suggestions for their management: Stay calm - most seizures will end on their own without any intervention. n Prevent injury to the person by moving harmful objects, but do not try to restrain. n Turn the person on their side. n Do not attempt to put anything in the mouth. n Be sensitive and supportive, and keep onlookers away. n If the seizure lasts more than five minutes, call the paramedics. n

Decisions on treatment of all brain tumors are made on an individual basis. It is important for the person with the brain tumor to become a partner in his or her care with the treatment team. All recommended treatments and side effects should be discussed and a mutually agreed-upon plan developed. n

From the IBTA E News January 2013 New drug targets: Researchers at the University of Pittsburgh (USA) have identified more than 125 genetic components in a chemotherapyresistant brain tumor derived cell line that might lead to appropriate adjuvant chemotherapy drugs. These targets could make the tumor more sensitive to temozolomide. The research was supported by grants from the NBTS and the National Institutes of Health (NIH). n

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Patient Advocates and Guideline Development: Token Involvement or Meaningful Input? By Kathy Oliver Co-Director, International Brain Tumour Alliance and Patient Issues Section Editor, European Association of NeuroOncology Magazine

CLINICAL practice guideline (CPG) development is thriving across Europe. We are moving toward consensus on the treatment of all kinds of cancer - from the very common to the very rare - reflecting the fact that treating cancer patients today requires a complex multidisciplinary approach. At a recent “Forum on Multidisciplinary Clinical Guidelines in Oncology” hosted by the European CanCer Organisation (ECCO), over a dozen major medical societies - who among them have created more than 175 sets of clinical practice guidelines - met to debate the possibilities of greater cooperation and harmonisation in the development of European guidelines. The aim is to increase their quality and use. But international harmonization of CPGs is a substantial challenge. A 2011 editorial in the Annals of Oncology explained that homogeneity among the developmental processes relating to internationally available guidelines does not exist [1]. Furthermore: “In a recent report, nine well-known CPGs (ASCO, ESMO, NICE, SIGH, START, NHMRC, NCI, NCCN and CCO) and three representative tumors (advanced breast, lung and colon cancer) were selected and scrutinized. Results have shown that a diverse heterogeneity in development, structure, target user and endpoints were prominent among them” [1, 2]. Of course, the creation of any CPG does not necessarily guarantee its full implementation across all treatment centres even in any one country. Compliance is a thorny issue and the tough economic times in which we now live, among other 88

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reasons, may preclude full adherence by cash-strapped health authorities. An example of non-uniform compliance is the “Improving Outcomes Guidance for Brain and other CNS Tumours” published by the UK’s National Institute for Health and Clinical Excellence (NICE) in June 2006 [3]. This crucial document sets out 11 key recommendations for delivering a high standard of care and support to this group of patients in England and Wales within the overall context of the UK National Cancer Action Plan. But six years later, these multidisciplinary guidelines are still not uniformly in place across all English and Welsh treatment centres. Another barrier to compliance is the challenge of dissemination. Guidelines are sometimes slow to pass into standard practice simply because they are not efficiently distributed and publicised. The same Annals of Oncology editorial mentioned above describes the European Society of Medical Oncology’s (ESMO) long-standing and successful association with the development and dissemination of clinical guidelines [1]. ESMO’s dissemination of its CPGs relies on a variety of different methodological tools such as “the translation of ESMO’s CPGs into various languages”; “the organization of the ESMO interactive sessions during the ESMO Congresses” and the “publication of editorials or articles [about CPGs] in oncology journals”. Future ESMO plans for increasing implementation and dissemination of CPGs include pocketsized booklets, slide sets, and mobile apps. It is important for clinical guideline developers to utilise patient advocates who can play an important role in contributing to the success of CPGs, from their very inception to their successful dissemination and

implementation. Currently, input into guidelines from patient advocates seems to range from involvement at the outset to simply reading the finished product and commenting. As NICE itself states: “...Patients and carers can help those responsible for developing a clinical guideline to understand what it is like to live with a medical condition... and what different forms of treatment and care mean to them.. This can include information about what patients want from their treatment and care, the acceptability of different treatments and their preferences for different treatment options.” [4] In the brain tumour community, patient advocates are a relatively numerous, outspoken group, considering that CNS tumours are a rare disease. Brain tumour patient advocates can help with scoping the objectives of a set of CNS CPGs. They can assist with defining key research questions. They can write and review recommendations. They are crucial in developing patient versions of CPGs, too. Brain tumour patient advocates were involved in the creation of clinical practice guidelines with the British Neuro Oncology Society (BNOS) in collaboration with the UK National Cancer Action Team (NCAT) who developed CPGs for four very rare brain tumours: adult PNET, primary CNS lymphoma, pineal and optic pathway glioma. [5] In recognition of the important role that brain tumour support, advocacy and information groups play, these four sets of guidelines also included an appendix listing the major brain tumour patient groups in the UK. We believe that this inclusion gave added value to the guidelines. According to the ECCO Patient Advisory Committee (PAC) Chair, Ian Banks: “An added benefit of patient involvement in the design of clinical practice guidelines is that the relationship between medical teams


and their patients can improve as a result of this collaboration. Patients’ involvement in guidelines may also increase concordance with therapy requirements.” Brain tumour patient advocates can also assist CPG developers with dissemination of guidelines throughout the brain tumour community. In the UK alone, nearly 50 brain tumour charities represent thousands of patients and their caregivers. These groups are potential conduits for spreading the word about clinical practice guidelines. The IBTA has identified an additional 20 brain tumour patient organisations across Europe that could help with the dissemination of CPGs. There are also various online forums for European brain tumour patients plus a number of major brain tumour e-newsletters which provide substantial communication channels. The IBTA’s mailing list for its monthly e-newsletter includes nearly 2000 European subscribers plus another 5000 people outside Europe. Involvement of brain tumour patient 53021*Pag Pubblicitaria:Layout 1 2-03-2011 advocates in the creation of CPGs does require, however, a commitment to appropriately train those advocates and

provide clear guidance as to exactly what is expected of them. Finally, it is important that brain tumour clinical practice guidelines fully reflect the collaboration and multidisciplinarity that is so crucial to successful treatment. To achieve truly patient-centric clinical guidelines, patient advocates should be involved in their creation, compliance, and dissemination. This involvement should not simply be tokenistic but should embrace real and meaningful input from the relevant patient community. n

Reprinted with kind permission of the European Association of NeuroOncology Magazine: EUR ASSOC NEUROONCOL MAG 2012; 2 (3) 140-141. As well as a regular patient issues column, EANO’s official online magazine contains peer-reviewed articles and reviews, case reports, congress reports, letters, and society news and announcements from around the world with a special focus on Europe and the EANO Member States. To view the entire, 15:14 Pagina 1 free-access EANO magazine, please visit http:// www.kup.at/journals/eano/index.html

From the IBTA E News January 2013 Diesel fumes and childhood brain tumours (CBT): Researchers in Western Australia have found a connection between exposure to diesel fumes by mothers and fathers and the development of a brain tumour in their child. They wrote: “Increased risks were observed for maternal exposure to diesel exhaust any time before the child’s birth (OR 2.03, 95% CI 1.09–3.81) and paternal exposure around the time of the child’s conception (OR 1.62, 95% CI 1.12– 2.34). No clear associations with other engine exhausts were found. Our results suggest that parental occupational exposure to diesel exhaust may increase the risk of CBT.” The study involved parents of 306 cases and 950 controls. n

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International Symposium on Pediatric Neuro-Oncology Singapore 28 June - 2 July 2014. www.ISPNO2014.com By Stewart J Kellie, MD Pediatric Oncologist and Neuro-Oncologist; Chair, ISPNO 2014, Singapore

T

he International Symposium on Pediatric Neuro-Oncology (ISPNO) is the major meeting of the multi-disciplinary international community of professionals involved in the research, diagnosis, treatment and rehabilitation of infants and children with brain tumors. The meeting provides for the release of ground-breaking study results, updates in standards of care, and provides an opportunity for multidisciplinary education. The ISPNO meeting represents the commitment and dedication of the leaders in the field of pediatric neuro-oncology, and provides the platform for them to share their experiences and life-saving breakthroughs with their fellow colleagues. In addition, the meeting provides a forum for parents, survivors and those directly impacted by the experience of tumors of the brain or spinal cord in children. This component of the meeting has been increasingly well attended over the past few meetings. ISPNO is held every other year and the meetings rotate around the globe. However with the exception of three meetings held in Japan, the others since its inception in 1986 have been in North America or Europe. Singapore was selected as the location for the 2014 meeting because of the following reasons: n the enthusiasm of the local medical community and the shared vision for extending its established regional medical education outreach to include pediatric neuro-oncology; n the relative ease of access for delegates from regional developing countries, 90

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Singapore enjoys a well established reputation and acts as a hub for the provision of quality medical services to the Asian region; n Singapore offers a fascinating tourist experience, and is known internationally for its safety, cleanliness and ease of getting about. The pace of discovery and our knowledge of biology, treatment and late effects of paediatric CNS tumors have increased dramatically but many challenges remain, particularly in translating these advances to clinical care in developing nations. ISPNO 2014 will be located in Singapore with the aims of showcasing the leading international advances in basic, translational and clinical research and also recent advances in addressing the global burden of pediatric CNS tumors. On behalf of the Local Organising Committee, I invite everyone involved with pediatric neuro-oncology - professionals, patients, parents and their supporters to visit our website, put the date of ISPNO 2014 in their diaries and plan to make the journey to Singapore. n n

Above: Dr Stewart Kellie is Chair of ISPNO 2014 in Singapore

compared to travel to Sydney, which may have been prohibitive for many delegates from the Asian region; n Singapore is served by non-stop international flights from Australia, Europe and some North American centers;

Plan your 2013 “Walk Around the World for Brain Tumours” NOW! For further information contact chair@theibta.org or kathy@theibta.org

From the IBTA E News October 2012 Morphine for paediatric patients: New dosage recommendations for morphine for paediatric patients have been issued by the World Health Organisation which are described as “a more cautious approach”. They have been noted in the October issue of the WHO Access and Control Newsletter in which an article has been published as an Annex. n


Día de la Concientización de los Tumores Cerebrales DRA Alejandra T Rabadán, MD PhD (President of the Section of Skull Base, Latin American Federation of Neurosurgical Societies FLANC) wrote to the IBTA describing a “Brain Tumour Awareness Day” which was held for the first time in Buenos Aires, Argentina on 30th October 2012 in the Argentine Medical Association Building. Dra Rabadán said: “Our purpose was to present to the community and also to medical students, the red flags for early detection and information

about the modern diagnostic methods and treatments [for brain tumours]. “We emphasized the advantages of working in interdisciplinary teams to optimize the patient’s and family’s care. A scientific but comprehensible language was used. “The exchange was successful and conclusions included scientific and community projects for the next year. In the same way, several press interviews were performed. “We also support new projects such as the South American Glioma Network SAGN, and RAHON (Argentine Interhospital Neurooncological Registry). “As developing countries, it is very important for us to join our efforts in order to improve the education of specialized human resources, and to

Above: Participants at the Brain Tumour Awareness Day which was held for the first time in Buenos Aires, Argentina on 30th October 2012

work in the adequate distribution of material resources. Our final objective is to provide an equitative neurosurgery with more research and better treatments.”n

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Our goal is to help find a cure for brain tumours By Dominique David, Founder and President of ARTC Sud France

My name is Dominique David and since 2005 I have worked with ARTC Sud, an independent association in France for raising funding for brain tumour research. ARTC stands for Association pour la Recherche sur les Tumeurs Cérébrales – Sud (South). We are located in the south of France but we also have close links with ARTC Paris. ARTC Sud now has nearly 500 members. We work with state laboratories like INSERM and we provide money for researchers. We also help brain tumour patients and their families by answering their questions and giving them information. In addition, we represent brain tumour patients in relevant local and national conferences and meetings.

family is a tremendous support. I have also studied accounting and management which helps me to manage our association and the associated fundraising aspect of it.

Gratifying work

Above: ARTC Sud Founder and President Dominique David

Why ARTC Sud? I created ARTC Sud because my son, Benjamin, was diagnosed with a germinoma brain tumour in 2001. Before my son was diagnosed he was having trouble with his eyesight and a lot of very bad headaches. When he was diagnosed, he was unable to have neurosurgery because his tumour was too deep in the brain so he had a biopsy and then radiotherapy followed by chemotherapy for two-and-a-half years. My son is now very well, with no bad after-effects of treatment. Benjamin was treated by Professor Olivier Chinot in Marseille. At the end of my son’s treatment, and because I had retired from work (I was teaching history of art and involved with a museum association in Aix en Provence), I decided to spend my time helping raise money for brain tumour research and helping patients. I also wanted to do something to thank all the nurses and doctors who looked after my son because we had the exceptional luck to see my son cured. 92

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What ARTC Sud does As for the activities that ARTC Sud becomes involved in, we organise events and we work a lot with associations like local Lions Clubs or Rotary Clubs. We have four delegations who work for us in each French region in the south of the country by organising different kinds of fund raising events. Our organisation is now allowed to receive legacies and donations with tax advantages. We also publish an annual newspaper which I edit. We send it to our members and leave it at hospitals for patients. We also have a leaflet which we give to patients and caregivers and which describes our fund raising events, meetings and so on. We have also a website at www.artcsud.fr Each year, through our fund raising efforts, we support four or five young researchers and we also buy a lot of products and large equipment for laboratories. Luckily, I have undergone some training which helps me to work with patients. My

The help I can give to patients and their families is very gratifying and I am also lucky to have very good relationships with them. Knowing that our organisation is helping move research into brain tumours forward also makes me proud because in doing this work, we are also maintaining hope for the future. The biggest challenge of our work in the French brain tumour community has been to gain recognition as a real partner with the state institutions because our organisation is not very big and we have not been established for a long time. But we recognise that these things take time. Our goal is to help find a cure for brain tumours and we share that goal with others in the big institutions. When working with hospitals and institutions we also are able to give our opinions and advice based on the perspective of the brain tumour patient and family which we believe is a very important contribution and we consider this a great achievement of our work. I am often very busy but I do try and take time to relax. I love visiting museums, exhibitions, taking trips, meeting with friends, doing fitness activities and skiing. My three biggest wishes for brain tumour patients and their families would be that a cure is found for glioblastoma; that we discover through epidemiological studies what causes brain tumours in the first place; and that we should create more and stronger links between patients. n For further information on ARTC Sud, please visit http://www.artcsud.fr/


Rare Cancers:

« More common than you think! « More challenging than you think! « More joint action than you think! Rare Cancers Europe is a multi-stakeholder partnership initiative addressing methodological and regulatory barriers in rare cancer care, the need for centres of expertise and European reference networks, barriers to patients’ access to care, education of healthcare professionals and access to information on rare cancers. For more information, please visit www.rarecancerseurope.org.

provide information, help, support and counselling to brain tumour patients and patients’ friends and families. Call our help line on 0131-466-3116. We fund research into brain tumours and treatments, often alongside other charities, and support training of specialist nurses. Our charity provides a set of information leaflets and booklets to individuals and groups and gives news of our activities and details of many other support facilities throughout the UK at http://www.braintumouraction.org.uk Our work is run entirely by volunteers. Charity Number: SC 021490 We

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The English National Brain Tumour Registry and Patient Portal By Dr Jem Rashbass National Director for Disease Registration, Public Health England

Background In England, collecting data for cancer registration has traditionally been managed by eight Regional Cancer Registries covering populations varying from around 3 to 12 million. In 2008 it was decided that each of the Regional Registries should, in addition to their geographical coverage of their local population, take responsibility for an individual tumour site. The Eastern Cancer Registry and Information Centre (ECRIC) based in Cambridge, England became responsible for collating and quality-assuring data on all primary brain tumours. Later, a new National Brain Tumour Registry (NBTR) for England (see the NBTR website at http://www.nbtr. nhs.uk/) was established, having improved and expanded the previous Registry.

The need for better patient engagement In March 2011 ECRIC ran a workshop attended by around 120 members of the brain tumour community in England to discuss progress on the NBTR and how, once established, the data might be used. It was clear from this meeting that although the Registry would be able to collect useful clinical information on new cases when they first present, the ability to gather important follow-up and outcome data is limited. This data is particularly hard to collect because after the acute treatment period patients may be seen in many different healthcare settings and access to consistent data feeds or other resources for supplementation of the Registry data set is, therefore, difficult. It was also recognised that much of the valuable information on quality of life and co-morbidities collected in the follow-up period was likely to be “softer� information 94

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Above: The Brain Tumour Patient Information Portal makes use of an intuitive, user-friendly timeline interface. This aids navigation and promotes easy access to pathology and imaging reports as well as treatment information

and that data systems for collecting this sort of information were sparse across the National Health Service (NHS). It was therefore suggested that one approach to this would be to provide access to the NHS’s own information collected through the Brain Tumour Registry and for those patients who wished, to contribute to the registry data. The idea of the Brain Tumour Portal was born.

Initial Discussions The NBTR and the National Cancer Intelligence Network (NCIN) met in June 2011 with a range of brain tumour charities in England to discuss the concept of a Brain Tumour Portal. In general the response from the charities was extremely positive; several were keen to start work on the initiative as soon as possible while others were more hesitant, with anxieties over the implications for patients and their carers. We agreed to hold a wider consultation to identify issues and resources required and

then develop a route map to take the Brain Tumour Portal forward. We were clear from the start that this initiative should be led by the patients represented through the brain tumour charities that were best placed to understand the needs and concerns of patients and their carers. The NBTR would act as the data provider and ensure that appropriate technology was used to give those patients who wished secure access to their data. The Brainstrust brain tumour charity agreed to lead on patient engagement. Through a series of focus groups with patients and their carers they were able to rapidly establish that there was considerable support for this way of better patient engagement. They also used these meetings to identify the features that should be part of the Portal and help specify the user interface design. In parallel the team at the NBTR began to develop the secure data access systems and consult on the information governance arrangements.


Concerns Inevitably, an initiative like this creates concerns across the community such as: n Will patients understand the information? n Will it cause unnecessary anxiety? n Will clinical teams be able to cope with the extra demand for explanations? n What would happen if a patient does not want their carer to see the information or vice versa? Some clinicians suggested that the type of information available in the Registry was unlikely to be of interest to individual patients or that it might well be too technical. Others were concerned that the two or three months that it can take for information to arrive at the Registry makes the information of little value to a patient. While all these issues are relevant, the view taken by the NBTR is that the information that we hold belongs to the individual patient. It is for each patient to decide how their information should be used and who should have access to it. Using their existing networks, Brainstrust will take the lead to provide support to the brain tumour community. We at the NBTR have also started to work very closely with Cancer Research UK to provide detailed information on brain tumours and research that will help patients understand their own information as well as facilitate the discussion between professionals and individual patients.

Progress Considerable progress has been made on the technical infrastructure, the supporting documentation and the process that a patient will need to follow to get access to their data through the Brain Tumour Portal. With Brainstrust we have developed the web interface through which patients, in conjunction with their clinical teams, will be able to view their clinical information in the secure environment of an NHS clinic. In this setting the clinician will be able to explain what information is available and ensure that the patient and their carer (should they wish) fully understand the implications of accessing their information through a secure interface on the more widely available Internet. It is only once the patient has given permission for their data to be made available outside the private network of

the NHS that their registry records will be copied to a second secure server. Patients will then be able to access this information through the external secure web portal using a password and other details that only they know. Once they have registered and have secure access, any additional information received by the Registry about their case would automatically be appended to their records. It will be for the patient then to decide if they wish to share their registry information with others, be that for a second opinion, research or as part of a network of patients. We intend to develop a variety of online tools in partnership with patients and the charities to help patients manage and contribute to their own care.

Next steps The next stage will be a very limited pilot at three acute hospitals in England to test the processes for supporting the patient and securing consent; the quality of the

supporting information; and the technology behind data access and release. We expect the pilot to run from February 2013 for about six months during which time we will evaluate the project and identify any significant issues that need to be addressed. We will then use the results of the evaluation of the pilot to decide how best to proceed.

Conclusions Giving those who wish it greater control of their own information is an important step forward in patient empowerment. It has the potential to benefit the individual, their carers and support network and the clinical teams who look after them. Brain tumours are already relatively rare and there are many different varieties. As we move into the realm of stratified medicine each case will require individual and personalized treatments. The patient needs to be at the heart of that treatment - the Brain Tumour Portal is a way to help achieve that. These are exciting times! n

The NEWRO walk in Brisbane, Australia October 2012

An awareness-raising and fund-raising walk organised by the Brisbane (Australia) based NEWRO Foundation, in which Dr David Walker is active, attracted 346 participants who walked five kilometres each, for a contribution of 1730 kilometres to the IBTA’s “Walk Around the World for Brain Tumours”. n

Top: Orange feather boas add a bit of glam to the NEWRO walk Right: A close up of the walkers’ tee shirt (fill in your own letters!)

Above: Some of the NEWRO walkers, in their bright orange tee shirts, gather together

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Robert keeps on walking…and walking… and walking…and walking… By Michel Esnault, Chairman of Glioblastoma Fundation Michèle Esnault (GFME), France SIXTY-SEVEN year old Robert Siess, a retired man who worked for Peugeot France, decided to cross France on foot in memory of his wife, Rose-Marie who passed away from a brain tumour. Robert started his mammoth walk in Courtavon, near Strasbourg in Alsace. His target destination was Santiago de Compostela in Spain. Taking only a rucksack, sleeping bag and stick, Robert walked about 30 km each day. On 8th July, 2012, after a grueling trek which lasted 95 days and covered 2,200 kms in torrid heat, Robert entered the cathedral of Santiago de Compostela. Robert often walked alone but was sometimes accompanied by friends and patients. In the evening he slept in a shelter. He also saw a physician for his painful ankle. Not only did Robert walk to Santiago de Compostela, but he also walked back to where he started from, finally arriving home at

Above: Robert Siess on his triumphant arrival home on 14th October 2012 after a 3,650 km walk to Santiago de Compostela and back to Courtavon, France

Courtavon on 14th October 2012. The whole adventure took 194 days and covered 4,400 kms of which 3,650 were on foot. The mileage walked by Robert was symbolically donated to the “Walk Around the World for Brain Tumours” and a small reception was organized by the Association

Above: Robert stops for water on his trek. Temperatures on Robert’s walk reached 35C

pour la Recherche sur les Tumeurs Cérébrales (ARTC) to celebrate Robert’s safe return and pay tribute to him for helping to publicize the challenges of brain tumours. n

Brain Tumour magazine distributed around the world THE IBTA has contacts in 109 countries throughout the world to whom it makes available its free monthly electronic news and its free annual magazine, Brain Tumour. There is no other magazine like Brain Tumour, which reaches deep into the international brain tumour community and covers stories from patients, family members, healthcare specialists, researchers, scientists and professional societies. Twelve thousand copies of Brain Tumour magazine are printed and approximately 7,000 are mailed directly to contacts on the IBTA’s unique database. The remainder of the magazines are distributed at relevant scientific and patient conferences throughout the year. n Afghanistan n Albania n Algeria n Angola n Argentina n Australia n Austria n Bahrain n Bangladesh n Belgium n Bhutan n Bolivia n Bosnia and Herzegovina n Brasil n Bulgaria n Cameroon n Canada n Chile n China n Colombia n Congo n Costa Rica n Croatia n Cuba n Cyprus n Czech Republic n Denmark n Egypt n Eritrea n Estonia n Ethiopia n Finland n France n Georgia n Germany n Ghana n Greece n Guatemala n Hong Kong n Hungary n Iceland n India n Indonesia n Iran n Iraq n Ireland n Israel n Italy n Japan n Jordan n Kenya n Kyrgyztan n Latvia n Lebanon n Libya n Lichtenstein n Lithuania n Luxembourg n Malaysia n Malta n Mauritania n Mauritius n Mexico n Mongolia n Morocco n Myanmar n Namibia n Nepal n New Zealand n Nigeria n Norway n Pakistan n Panama n Paraguay n Peru n Philippines n Poland n Portugal n Qatar n Romania n Russia n Saudi Arabia n Serbia n Singapore n Slovak Republic n Slovenia n South Africa n South Korea n Spain n Sri Lanka n Sudan n Sweden n Switzerland n Syria n Taiwan n Thailand n The Nertherlands n Turkey n Uganda n Ukraine n United Arab Emirates n United Kingdom n United States n Uruguay n Venezuela n Vietnam n Yemen n Zambia n Zimbabwe n 96

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Brain Tumors Research Association To support neuro-oncological research

We support more. Call +44 (0)1983 292 405 or visit www.brainstrust.org.uk

Soutenir la recherche en Neuro-Oncologie

The Association’s main goals are to improve basic, translational, and clinical research in the field of brain tumors and to support hospital services. Son objectif est le progrès de la connaissance fondamentale, clinique et thérapeutique dans le domaine des tumeurs cérébrales.

Turning small change into big change.

To act specifically Agir spécifiquement

The ARTC deals mainly with primary brain tumors. Research laboratories and clinical Departments are supported directly and through fellowship grants. A particular attention is paid to research on quality of life issues. Moreover, ARTC recently developed a program to support neurooncology training and care in French-speaking Western Africa. L’ARTC s’intéresse principalement à la prise en charge des tumeurs cérébrales primitives. Elle soutient des laboratoires de recherche ainsi que des départements cliniques, notamment grâce à l’attribution de bourses à des jeunes chercheurs.

a.r.t.c@free.fr

Association pour la Recherche sur les Tumeurs Cérébrales Groupe Hospitalier Pitié Salpêtrière Fédération de Neurologie – Mazarin 47, Boulevard de l’Hôpital 75013 PARIS

www.artc.asso.fr Brain Tumour

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Supporting organisations (162) for the IBTA’s 2012 awareness-raising activities Accelerate Brain Cancer Cure (USA) n ACT Brain Tumour Network (Australia) n Addi’s Faith Foundation (USA) n Adult Brain Cancer Support Association of South Australia n Alis’ Dream (UK) n American Brain Tumor Association (ABTA) n Anna’s Hope (UK) n Andrew McCartney Trust Fund (UK) n Angels Among Us Walk (USA) n Association pour la Recherche sur les Tumeurs  Cérébrales - Paris (ARTC - France) n Association pour la Recherche sur les Tumeurs Cérébrales - Rhone Alpes (ARTC - France) n Associazione Italiana Di Neuro-Oncologia (AINO) n Astro Brain Tumour Fund (UK) n Australian Genomics and Clinical Outcomes of High Grade n Glioma (AGOG) n Australian Pituitary Foundation Ltd n Austrian Society for Neurooncology (SANO) n Barbara DiStase Memorial Walk (USA) n Barrow Neurological Institute (USA) n Belgian Association of Neuro Oncology (BANO) n Ben & Catherine Ivy Foundation (USA) n Beyin Tumori Tedavisi (Turkey) n Brad Kaminsky Foundation for Brain Tumor Research (USA) n Braincare BC (British Columbia Cancer Agency - Canada) n Brain and Spine Foundation (UK) n Brain Candy Project (USA) n BrainLife (Italy) n Brain Science Foundation (USA) n Braintrekking (Hong Kong) n Brain Tumour Action (BTA UK) n Brain Tumour Alliance Australia (BTAA) n Brain Tumour Association of Western Australia n Brain Tumour Barcelona (Spain) n Brain Tumour Foundation of India n Brain Tumour Research (UK) n Brain Tumour Research and Support Across Yorkshire (UK) n Brain Tumour Research Campaign (BTRC - UK) n Brain Tumour Support Group, The Austin Hospital (Australia) n Brain Tumour UK n Brainwaves Brain Tumour Support Group (UK) n Brains Together for a Cure (USA) n Brainstrust (UK) n British Acoustic Neuroma Association (BANA) n British Neuro-Oncology Society (BNOS) n Bryan’s Dream Foundation (USA) n BT Buddies (UK) n California Brain Tumor Association (USA) n Canadian Alliance of Brain Tumour Organizations (CABTO) n Cancer Council Queensland Brain Tumour Support Group (Australia) n Cancer52 (UK) n Capitulo de Neurooncologia y Base de Craneo Asociacion Colombiana de Neurocirugia (Colombia) n CART-WHEEL (Australia) n Cathean Limited Medical Writing Consultancy (UK) n Cellular and Molecular Neuro-oncology Research Group, University of Portsmouth (UK) n Central Brain Tumor Registry of the United States (CBTRUS) n Central New Jersey Brain Tumor Support Group (USA) n Centre de Recherce Public de la Sante (CRP-Sante-Luxembourg) n Charles Warren Brain Tumor Awareness Foundation (USA) n Charlie’s Challenge (UK) n CHANCE CHildren AgaiNst CancEr Association Beirut (Lebanon) n Children’s Brain Tumour Research Centre, Nottingham (UK) n Clowns in the Sky (UK) n Collaborative Ependymoma Research Network (CERN) Foundation n Comprehensive Cancer Center Vienna Central Nervous System Tumours Unit (CCC-CNS - Austria) n Chris Elliot Fund/The Elliott Foundation (USA) n Cristian Rivera Foundation (USA) n Cullather Brain Tumor Quality of Life Center, Bon Secours Health System (USA) n Deutsche Hirntumorhilfe (Germany) n Dr Marnie Rose Foundation (USA) n Ed Evans Foundation (UK) n Edinburgh Centre for Neuro Oncology (ECNO - Scotland) n European Asscociation of NeuroOncology (EANO) n European CanCer Organisation (ECCO) n European Organisation for Rare Diseases (EURORDIS) n European Organisation for Research and Treatment of Cancer - Brain Tumour Group (EORTC BTG) n European School of Oncology (ESO) n Florida Brain Tumor Association (USA) n Forty-second Vienna Scout Troop “St Sebastian” (Austria) n Gerry and Nancy Pencer Brain Tumor Centre (Canada) n Glioblastome Association Michele Esnault (GFME - France) n Gray Matters Foundation (USA) n Grey Matters (Australia) n Gruppo Italiano Cooperativo di Neuro-Oncologia (GICNO) n Hammer Out Brain Tumours (UK) n Headsmart - Be Brain Tumour Aware (UK) n Hjernesvulstforeningen (Norway) n Il Fondo di Gio ONLUS (Italy) n Imagine for Margo (France) n Indian Society for Neuro Oncology (ISNO) n Instituto nacional de enfermedades neoplasicas INEN (Peru) n International Association for Hospice & Palliative Care (IAHPC) n Irene ONLUS (Italy) n Joe Di Palma Brain Tumor & Pediatrics Foundation (USA) n John Sierzant Brain Tumor Support Group (USA) n Katie McKerracher Trust (UK) n Kartu Lengviau (Lithuania) n Kevin Mullin Memorial Fund for Brain Tumor Research (USA) n Kings Health Partners Neuro Oncology Service (UK) n Kortney Rose Foundation (USA) n Latin American Federation of Neurosurgical Societies (FLANC) n League Against Cancer, County PGZ-Rijeka (Croatia) n Leap For A Cure (USA) n Legacy Brain Foundation (USA) n Levi’s Star (UK) n Liverpool Hospital (Australia) Brain Tumour Education and Support Group n Mark Linder Walk for the Mind (USA) n mAss Kickers Foundation (USA) n Meagan’s Walk - Creating a Circle of Hope (Canada) n Meningioma UK n Michael G. Belz Foundation (USA) n Michael Quinlan Brain Tumor Foundation (USA) n Monmouth and Ocean County Brain Tumor Support Group Inc (USA) n Musella Foundation (USA) n Naseem’s Manx Brain Tumour Charity (UK) n National Brain Appeal (UK) n National Brain Tumor Society (USA) n Neurooncological Section of the Argentine Society of Cancerology n Neurooncology Working Group of the German Cancer Society - NOA n Neuroscience Centre, New Queen Elizabeth Hospital, Birmingham (UK) n Newro Foundation (Australia) n Nicholas Connor Institute (USA) n Nick Gonzalez Foundation for Brain Tumor Research (USA) n NOgIN, The Neuro Oncology Information Network, Westmead (Australia) n Northwestern Brain Tumor Institute (USA) n One More Day Inc (David Bailey - USA) n Paul Levitt Foundation (UK) n Pediatric Brain Tumor Foundation (US) n Pediatric Brain Tumor Network of Japan (PBTN) n Philippine Alliance for Brain and Spine Tumours Inc n Philippine Brain Tumour Alliance n Rachael’s Ribbons of Hope

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Foundation (USA) n Rare Cancers Europe n Rare Disease UK n ROC On! (USA) n Rarer Cancers Foundation (UK) n Romanian Society of Radiotherapy and Medical Oncology n Sally Payne and Friends (Australia) n Scottish Adult Neuro-Oncology Network (SANON) n Second Department of Neurology, University and Derer Hospital, Bratislava (Slovak Republic) n Society for Neuro-Oncology (SNO - USA) n Sontag Foundation (USA) n Sophie’s Wish (UK) n Southeastern Brain Tumor Foundation (USA) n STOPhersentumoren.nl (The Netherlands) n Students Supporting Brain Tumor Research (SSBTR - USA) n Svenska Hjarntumorforeningen (Sweden) n Sydney Neuro Oncology Group Ltd (Australia) n Tali’s Fund (Canada) n Teenage Cancer Trust (UK) n The Brain Tumour Charity (UK) n The Christie Radiotherapy/CNS Team (UK) n The Cure Starts Now Foundation (USA) n Tug McGraw Foundation (USA) n United Brain Tumour Support (Australia) n Victorian Race Walking Club Inc (Australia) n Voices Against Brain Cancer (USA) n We Can, Pediatric Brain Tumor Network (USA) n Wendy J Pierson Foundation for Brain Cancer Research (USA) n Werkgroep Hersentumoren (Belgium) n Worcestershire Brain Tumor Support Group (UK) n Wylie’s Day Foundation (USA) n Zimbabwe Brain Tumor Association n Z.V.I. Health Consumers (Israel) n

Sincere thanks to the above organisations for their support of the 2012 Walk Around the World for Brain Tumours and the International Brain Tumour Awareness Week

Creating a circle of hope: a giant hug for SickKids MEAGAN’S Walk is sharing the message of hope to increase public awareness about brain tumours and the devastating effects they have on children and their families while raising valuable financial resources for research into paediatric brain tumours. Teams of people gathered at Ontario Place in Toronto, Canada on the morning of Saturday, May 12, 2012 for the 11th Annual Meagan’s Walk and Hug. It was a warm, sunny day for the participants as they remembered and honoured the children. Banners, sweatshirts, hats, t-shirts and bandanas showed the names of specific children affected by paediatric brain tumours. Groups of children from schools carried their school banners and demonstrated their general support for the cause. The massive group of people walked through the streets of Toronto towards the Hospital for Sick Children (“SickKids”) and as they did, they were encouraged to reflect on why they walk. A short time later, the teams and individuals arrived at SickKids and formed a circle around the hospital. Because it was a warm day, many patients were allowed to emerge from the hospital to

Above: Dr. Eric Bouffet addresses the crowd at SickKids as part of Meagan’s Walk 2012 Photography: Gordon Cheong, Toronto, Canada

Above: Participants warm up for Meagan’s Walk 2012 Photography: Gordon Cheong, Toronto, Canada

witness the hug and to feel the love. Many other children who were in the hospital pressed their faces against their windows and peered down on the hundreds of people who joined hands to hug the hospital. The hug is a symbol of hope and community. It makes those who are inside the embrace feel loved and cared for, and it makes the participants realize that they are part of something which is very significant.

After the hug, attention was turned to the stage where Denise Bebenek, Meagan’s mom and founder of Meagan’s Walk, thanked the crowd for supporting paediatric brain tumour research. The crowd cheered when she explained that 100% of receiptable donations are directed to research. To the delight of many patients and parents, Dr. Eric Bouffet, Neurooncologist and Director of the Brain Tumour Program at SickKids, addressed the crowd. His enthusiasm for the mission of Meagan’s Walk was contagious and his appreciation of the support of so many people was genuine. He was joined by several young people who shared why they walk. Holly, a high school student, said: “I walk because without the incredible contribution of organizations like Meagan’s Walk, my cousin would not be alive.” There were many tears, smiles and hugs shared that day, and there are sure to be more at the 12th Annual Meagan’s Walk on Saturday, May 11, 2013. Over the past eleven years, thousands have participated in this event and Meagan’s Walk: Creating a Circle of Hope has contributed more than $2.7 million (Cdn) to SickKids for paediatric brain tumour research at the Hospital for Sick Children. n

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An interview with Dr Santosh Kesari IBTA: Do you think it is necessary for clinicians to “think outside of the box” when it comes to treating brain tumours, due to their devastating nature? What kind of “thinking outside of the box” might that entail? SK: Yes, we all have to think outside the box creatively if we are going to make the big gains needed in this disease. New brain tumor-specific drugs need to be developed and developing more effective combinations of existing drugs will be important even though brain tumors represent a relatively small market.

Dr Santosh Kesari is the Director of the Neuro-Oncology Program at Moores Cancer Center, UC San Diego Health System. He is also the Director of the Translational Neuro-Oncology Laboratories and the Neurotoxicity Treatment Center and Professor in the Department of Neurosciences at UC San Diego. Here he talks to ‘Brain Tumour’ magazine about his work and his five-to-ten-year goal. IBTA: Where did you spend your childhood? SK: I was born in Hyderabad, India and moved to the USA when I was seven and grew up in the state of West Virginia. IBTA: Did you come from a family environment that had a connection with medicine or research? SK: My father was a family practitioner in rural West Virginia so I was exposed to medicine at an early age. Interest in research developed over time as I understood that we did not really fully understand the human body and, in particular, the brain. IBTA: What attracted you to medicine and later to the brain tumour area? SK: I have always had an interest in how the brain works, in the nature of the mind, and thinking about who we are. Over time I was attracted to the neurosciences in college and medical school. My PhD was actually in using the herpes viruses for oncolytic therapy of brain tumors with neuroscientists Drs John Trojanowski and Virginia Lee at Penn and Dr Nigel Fraser at Wistar. I also worked with Dr. Amy Pruitt at the University of Pennsylvania on clinical research on brainstem tumors which solidified my interest in neuro-oncology. IBTA: How do you cope with the emotional and psychological challenges to you personally arising from your work? SK: It is always difficult to lose a patient and in the beginning I had a hard time dealing with it. But over time I have refocused those emotions into working harder to find better drugs in the lab 100

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Above: Dr Santosh Kesari with his three children

and also in developing better, more innovative clinical trials for my patients. I have also experienced losing an aunt to glioblastoma in 2011 so have further personal motivation to do better than the current standard treatments. IBTA: Do you anticipate any significant breakthrough in brain tumour therapies in the next ten years? If so, in what areas? SK: Absolutely. There are many new drugs in clinical trials and more in the developmental pipeline. Also, in our lab at UCSD we are working on what we hope might develop into the first glioblastoma stem-cell specific drug which we hope will be able to reach the stage of testing for human use in the next three years. As well, we have developed a novel nanoparticle method which may allow available drugs to penetrate into brain tumors better and this is also being further developed for human trials in the next two years. Finally, we have developed a computerized approach to predicting which patients will benefit from which drugs so we can better personalize treatments. My five to ten-year goal is to work hard to help get at least one new drug approved for brain tumors and help to develop better clinical predictors (biomarkers) of response to current drugs.

IBTA: We have read that you are particularly interested in personalised treatments for brain tumour patients. In your view, what are the advantages of personalised medicine? What are the disadvantages? SK: Personalized medicine means that we can maximize an individual’s response to a medication while minimizing toxicity or preventing treatment failures from ineffective drugs. The main difficulty is figuring out how to do this and incorporating this into our clinical work flow in our currently burgeoning health care economy. Using biomarkers to select treatments already occurs in other cancers, such as Herceptin for Her2+ breast cancer, EGFR inhibitors in EGFR mutated lung cancers, and BRAF inhibitors in BRAF mutant melanomas. It will take time and upfront investment in biomarker studies to show their value over time. IBTA: How do you relax? Do you play music, go for walks, sail a boat? Do you have a hobby? SK: There is much work to be done to cure brain cancers and so I have not been relaxing much until recently! My wife and I have three kids and they are getting older and more demanding so I am trying to spend more time with them going to parks, the beach and museums. I do love to travel and experience different cultures and wish I could do more of that with my family. n


Cyprus Brain Tumour Association Offers Support and encouragement to brain tumour patients and their families Aims to achieve recognition of the specific challenges • brain tumour patients and their carers face in dealing with the disease Gives information for brain tumour patients to assist • making treatment decisions Supports research for the development of more • effective therapies •

Gio’s Fund for research on brain tumors As long as we continue to nourish research on the brain tumors of our children, we nourish hope.

Among projects currently supported   

dendritic cell immunotherapy of glioblastoma molecular stratification of high grade glioma in children generation of immortalized cell lines of human medulloblastoma through the expression of a dominant negative form of TP53 gene morphine threatment wich permits doxorubicin to cross blood brain barrier in rat model

Il fondo di Gio – onlus http://www.ilfondodigio.it/

Tel.: 00357-99581230 / 00357-99871587

Email: cybraintumour@hotmail.com / masolomou@hotmail.com 4B Agiou Damianou Street • 2054, Archangelos • Nicosia • Cyprus Facebook: Cyprus Brain Tumour Association

Astro Fund IBTA 2011 advert_Layout 1 29/01/2013 11:55 Page 1

Charity No. 113356

FINDING A CURE FOR BRAIN TUMOURS

Funding research and offering information, inspiration and hope for those affected by slow-growing brain tumours. Low-grade brain tumours can lie undetected for many years before symptoms suddenly appear and turn victims’ lives upside down. They cause progressive mental and physical problems, and sometimes transform to a more malignant form of brain tumour. Astro Fund is working hard to end the anguish for those living with this devastating form of cancer by funding research throughout the UK and providing two international online support groups for patients and carers.

01485 57 27 67 info@astrofund.org.uk or browse our website at www.astrofund.org.uk For more details, please contact us on email

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Does the IBTA have your email address? ARE you receiving a hard copy of Brain Tumour magazine annually but not receiving an electronic copy of the IBTA’s monthly E-News bulletin because we have your postal address but not your email address? On our extensive database, there are 1,500 people in this category and we invite you to send your email address to us (send to: chair@theibta.org) if you wish to be sent the monthly E-News. It is a free service. This offer is also available to anyone else not currently receiving the E-News.

r New Zealand brain tumou patient faces deportation: lived in A British family who have rs face yea en New Zealand for sev er has fath deportation because the NZ a brain tumour. Immigration ce Bru er nag ma acting general tion for Burrows said their applica

meningiomas: Pregnancy and ve been known Meningiomas ha lly grow dramatica to occasionally y ud en. A st in pregnant wom November issue e published in th concludes that: of Neurosurgery sociated “...pregnancy-as l cated in the skul meningiomas lo l ica rg require su base are likely to s visual complaint intervention for pid e palsies. The ra and cranial nerv to more often due tumor growth is ic am yn od ible hem potentially revers ethan hormon changes rather proliferation.” n induced cellular Repeat resections: In a stu dy of 578 GBM patients Johns Ho pkins University researchers in the USA found that those who had repeated resections had longer surviva l than those who had just a one -time operation but the authors caution there may have been intrins ic bias because of patient selection .

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The monthly E-News bulletin usually consists of between 14 and 16 short items about developments in the international brain tumour community: drug development milestones, information on forthcoming conferences, legal cases, patient stories, promising research, etc. Here are some examples of news items reported in recent issues. Because the ENews is sent digitally it contains hyperlinks for those who want to check the original source material. n

ause residence was rejected bec actively Mr Crystal was no longer to in business and was “likely ands dem or t impose significant cos es”. vic ser on New Zealand’s health n bee e Friends and neighbours hav h and helping the family with cas other donations. n

Low-grade glio mas (LGG): In an article in JAM A which is freely available and is accompanied by a supportive ed itorial, Dr Asgeir S Jakola from No rway reports on a comparison of the results for LGG patients at two Norwegian hospitals where one group was given early tum our resection an d the other group a biopsy and watchful waiting. The first group had better overal l survival. n n fields: Smaller radiatio ptist Wake Forest Ba Researchers at in the USA in a Medical Center y involving 161 retrospective stud lieve they have GBM patients be patients receiving established that y with smaller radiation therap an do any worse th margins do not n . margins those with larger

AVAglio: Re sults were announced at the SNO (Society for to as a 56 Neuro percent imp Oncology) C rovement in onference o PFS or a 4.4 f month imp th e Phase III AVAglio st rovement in udy compa median PFS ring Avastin . Interim resu (bevacizum lts for overa ab) in com su rvival did n ll bination w ot reach sta radiation an it h ti stical d temozolo significance mide versu (HR=0.89; p radiation an s =0.2135). d temozolo Final data o m n id overall surv e plus placebo in ival are patients ne expected in wly diagno 2013. Seco with gliobla sed ndary stoma. The endpoints included a Avastin arm showed a number of 36 percent relevant he reduction in alth-related the risk of d quality of isease wors life measure ening or s; an additio death whic nal benefit h can also was that p be referred atients in th e Avastin a required less rm corticostero ids. n Scorpion toxins and illuminating brain tumours: This is a link to a short video which describes the development of a process whereby scorpion toxins are combined with molecules that glow in near-infrared light and make tumour cells visible to the neurosurgeon. Trials in humans are planned for late 2013. Meanwhile, the widely distributed

USA Today magazine contained a supplement in its December issue which included a reference to the 5-ALA tumor fluorescence technique which also lights up tumor cells in the brain. The item quoted Dr Michael Vogelbaum from the Cleveland Clinic, who is conducting one of the clinical trials for 5-ALA in the USA. n


groups UK brain tumour charity The and merge: Tumour UK rly Brain Tumour Charity (forme in the Samantha Dickson Bra ced oun ann st) Tru Brain Tumour rch Ma from in January that as one 2013 they will merge into organisation and will retain the name The Brain Tumour Chair, Charity. Andy Foote will be and Neil Dickson Vice Chair, Chief Sarah Lindsell will remain will Executive. The new group two are re have 40 staff. The the video presentations about t of the merger available here. Par is the motivation for the merger tumour in bra se potential to increa research funding. n

The Andrew McCartney Trust Fund for Brain Tumour Research Does it Again!

Above: Fifty-two people and six dogs eagerly await the start of the 2012 Andrew McCartney

Public service an nouncements: In the Novembe r E News we reported on community or public service television announcements (PSAs) from The Netherland s and Australia. The Brain Tumou r Foundation of Canada has ad vised us of thre e outstanding PS As they have made in collabo ration with Davi d Rey, an award w inning Canadian film maker and other filmmaker s from Canada an d the USA. David’s brother died of a brain tumour in 2011 .n

Solvents not at fault: In a in report published on 3 August l nta me iron Env Occupational and e hav rs che Medicine US resear e found no consistent evidenc or for increased risk of glioma tional upa occ g win follo meningioma vents sol d ate exposure to six chlorin s wa re they studied. However, the tion some suggestion of a connec and de lori ach tetr between carbon h wit s ject sub glioma for exposed n n. dia exposure above the me

Trust Fund for Brain Tumour Research’s 5th Charity Balloon Walk in Wales, UK

THE Andrew McCartney Trust Fund for Brain Tumour Research (based in Wales, UK) organised their 5th Charity Balloon Walk at Lake Vyrnwy on Saturday, 20th June 2012. Charles and Olga Grant, the Trust’s founders, said: “It was a misty and overcast morning which greeted our loyal supporters who again arrived from far and wide to collect a balloon and take up the challenge of a 13-mile walk around this beautiful lake in the stunning mid Wales countryside. “Before the start of this year’s walk we took the opportunity to present a cheque for another £25,000 to Dr Andrew Peet of the University of Birmingham. “This donation will fund a further 15 months’ research at the Cancer Sciences Department at the University of Birmingham into the significance of lipid droplets in brain tumours. “This year we had a total of 52 walkers with ages ranging from one year to 74 years - the widest age span so far.

“We also had a record six dogs participating and must give a special mention to four-legged Sam who had his own sponsor form and raised an amazing £53.00. The total amount raised from the walk is expected to be in excess of £4,000. We were very pleased to donate 676 miles to the IBTA’s Walk Around the World for Brain Tumours.” n

Above: Awareness-raising dog Sam collected an amazing £53 in sponsorship for his Lake Vyrnwy four-legged walk

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Brain Tumor Vaccines By Patrick C Gedeon and John H Sampson, MD, Ph.D. Duke University Medical Center, Durham, North Carolina, USA

VACCINES have significantly reduced the prevalence of infectious disease. Smallpox for example, a disease which for more than three thousand years left countless scarred, blind, or dead, is now ancient history as wide-spread vaccination has eliminated the responsible virus. Most people never witness the devastating impact of many oncecommon diseases, including mumps, tetanus, and polio, which today only occur in unvaccinated patients. Just as vaccines are useful in the battle against infectious diseases, vaccines currently under development are proving to be highly-effective in the fight against brain tumors. Unlike vaccines against infectious diseases, however, these vaccines are designed to be effective after the patient develops the disease.

Location, location, location In the central nervous system, just as in real-estate, location is critical; each part of the brain serves an important function. When treating brain tumors, doctors must delicately balance the need to eliminate all tumor cells with the need to protect non-tumor cells serving critical functions. Unfortunately, aggressive tumor cells often spread out from the center of the tumor, plant themselves into surrounding areas and intermingle with functionally important healthy cells. Using even the latest surgical and radiotherapy techniques, these outlying tumor cells cannot be removed without causing damage to intermixed normal cells. Likewise, since most chemotherapeutic drugs target tumor cells and non-tumor cells alike, chemotherapy must be withdrawn when injury to areas outside of the tumor can no longer be tolerated. Unfortunately, this leaves behind tumor cells which can multiply, preventing a cure. 104

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Brain tumor vaccine development

Above: Patrick C Gedeon (left) is an MD/Ph.D. student investigating novel brain tumor vaccines under the guidance of John H. Sampson, MD/Ph.D. (right) at the Duke Brain Tumor Immunotherapy Program in the United States

The immune system follows highly regulated protocols to fight disease Stimulating the immune system to fight brain tumors offers a promising solution to this dilemma, and has proven safe and highly effective in a number of clinical trials. The immune system continuously distinguishes between healthy cells of the body and a host of insults bacteria, viruses, and otherwise - that we encounter on a regular basis. When these “foreign� insults enter the body, the immune system follows highly regulated protocols to eliminate them. In the same way, the immune system can, on an individual basis, differentiate between healthy cells and tumor cells, and upon recognition of a tumor cell, undertake the steps necessary to remove it from the body. However, since tumors have many characteristics in common with normal tissue and because tumor cells often take on new properties to evade the immune system, without help the immune system’s ability to fight tumors is compromised. Fortunately, with the right vaccine, the immune system can be programed to identify and safely eliminate each and every tumor cell, leaving non-tumor cells unharmed.

Several brain tumor vaccines are currently under clinical investigation. These include peptide, dendritic cell, and T-cell vaccines. At the Duke Brain Tumor Immunotherapy Program, and at medical centers across the world, these state-of-the-art vaccines continue to produce highly encouraging results. Many patients diagnosed with brain tumors, after receiving vaccinations in addition to normally prescribed treatments, continue to defy the all-too-common grim statistics associated with some forms of brain tumors.

Peptide vaccines for brain tumors Peptide vaccines work in a similar fashion to traditional vaccines designed to fight infectious diseases. An inactive peptide - a small piece of large protein - is given to a patient to incite their immune system to attack tumor cells containing the specific protein from which the peptide is derived. When administered alone, a peptide is too small to induce an immune response but when joined to a larger molecule designed to carry the peptide and engage the immune system, it can trigger a strong immune response. This response is directed specifically against the small peptide and consequentially against tumor cells containing the protein from which the peptide is derived. Rindopepimut is an example of a peptide vaccine currently in late stage clinical development for the treatment of glioblastoma, a highly malignant brain tumor (see Figure 1). The peptide vaccine stimulates an immune response against epidermal growth factor variant III (EGFRvIII), a protein found exclusively in glioblastoma cells. After vaccination, the body produces EGFRvIII specific antibodies, special molecules that coat the surface of tumor


Above: Figure 1: overview of treatment with rindopepimut for EGFR-vIII positive glioblastoma

cells containing the EGFRvIII protein. When bound to tumor cells, these antibodies trigger a regulated process whereby the tumor cells are cleared from the body. As another line of defense, the vaccine also induces immune cells in the body to fight tumors independent of antibody binding. Together, this carefully controlled vaccine-mediated response consistently eliminates all tumor cells containing the EGFRvIII protein. In several phase II clinical studies, vaccination with rindopepimut extended the survival of patients with glioblastoma by an average of nearly one year, when given in addition to conventional therapy. Since the EGFRvIII protein is found exclusively in tumor cells, the vaccineinduced immune response leaves normal cells in the body unharmed. The only side effect reported among the majority of patients who received rindopepimut vaccinations was some mild skin discomfort on the upper thigh where the vaccine was injected. The rindopepimut vaccine has now

advanced to an international phase III clinical trial being conducted at over 100 medical centers across the world.

Dendritic cell vaccines and adoptive T-cell therapy Another strategy, dendritic cell vaccines, has also produced promising results for brain tumor patients. Dendritic cells, also known as professional antigen presenting cells (APCs), play a critical role in the immune system. They capture large molecules from their surroundings, chop the large molecules up into smaller pieces, and then display the small processed fragments on their surfaces. With these fragments on their surface, dendritic cells can direct T-cells, as well as other immune cells, to attack, kill, and eliminate cells containing the originally captured molecule. To exploit this process, dendritic cells taken from a patient’s blood are incubated with tumor molecules isolated from a patient’s tumor. The prepared dendritic cells, with processed tumor molecules

on their surface, are then injected back into the patient where they proceed to orchestrate an assault against the tumor. In other clinical trials T-cells, one of the body’s most deadly weapons against tumor cells, are being modified to increase their activity against brain tumors in what is termed adoptive T-cell therapy. T-cells have the capability to seek out and destroy tumor cells. Under the right conditions, when a T-cell recognizes a tumor cell, the T-cell releases deadly molecules that enter the tumor cell and trigger a cascade of events resulting in death of the tumor cell. Unfortunately, in many patients, T-cells that recognize tumors are short in supply. However, by harvesting T-cells from a patient’s blood or tumor tissue, scientists are able to induce tumor reactive T-cells to replicate, or even introduce new molecules into T-cells that enhance their ability to recognize tumor cells. With an abundance of highly-specific tumorreactive T-cells in hand, clinicians are able to inject these cells back into patients producing highly-successful outcomes, even among patients with late stage disease. n

From the IBTA E News November 2012 3D Neurosurgery: An electrical engineer who underwent four operations for a brain tumour nineteen years ago has invented a 3D endoscope which was used for the first time in Canada last month to remove a brain tumour. More than a dozen hospitals already use the device in the USA where it was approved by the FDA about 18 months ago. Meanwhile, the US National Institutes of Health (NIH) has given a USD $2m grant to researchers at the University of Maryland to continue with their development of a “Minimally Invasive Neurosurgical Intracranial Robot” which may assist in the removal of difficult-to-reach brain tumors. n

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Update on the HeadSmart Be Brain Tumour Aware Campaign Under 5

Preschool

IN the 2012 edition of the IBTA magazine, we ran a feature story on HeadSmart Be Brain Tumour Aware, a UK campaign to speed up diagnosis of brain tumours in children. We thought our readers would be interested in having an update about this project, the aims of which are: to increase the public’s and professionals’ awareness of brain tumour symptoms n to promote a fast strategy for selecting patients who need a scan n to recommend situations where a child should be reviewed within a short time and n to identify when a child and their family can be reassured that they don’t have a brain tumour and can go home with no worries about that possibility.

Brain tumours happen... Symptoms include:

5 - 11

Children

12 - 18

Young People Brain tumours happen... Symptoms include:

Brain tumours happen... Symptoms include:

Persistent / recurrent vomiting

Persistent / recurrent headache

Persistent / recurrent headache

Balance / co-ordination / walking problems

Persistent / recurrent vomiting

Persistent / recurrent vomiting

Balance / co-ordination / walking problems

Balance / co-ordination / walking problems

Abnormal eye movements

Abnormal eye movements

Blurred or double vision

Blurred or double vision

Behaviour change

Behaviour change

Fits or seizures

Fits or seizures

Abnormal eye movements Behaviour change, particularly lethargy Fits or seizures (not with a fever) Abnormal head position such as wry neck, head tilt or stiff neck

Abnormal head position such as wry neck, head tilt or stiff neck If your child has one of these, see your doctor If two or more, ask for an “urgent referral”

If your child has one of these, see your doctor If two or more, ask for an “urgent referral”

Delayed or arrested puberty, slow growth If your child has one of these, see your doctor If two or more, ask for an “urgent referral” Especially if growth or puberty is slow

n

The HeadSmart Be Brain Tumour Aware campaign was launched in June 2011 by the Children’s Brain Tumour Research Centre at The University of Nottingham and Nottingham Children’s Hospital (Nottingham University Hospitals NHS Trust), The Royal College of Paediatrics and Child Health and the Samantha Dickson Brain Tumour Trust, now called The Brain Tumour Charity. The campaign was funded by The Health Foundation, Closing the Gap Campaign and relied upon the National Cancer Research Institute Children’s Cancer and Leukaemia Research Network (NCRI CCL RN) Clinical Champions in each of the

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Above: The HeadSmart Be Brain Tumour Aware symptom card

treatment centres to raise awareness amongst patients and their families, local paediatricians and general practitioners. They also collected crucial information from patients as they were diagnosed to measure the changes in referral practice to drive the campaign. Since Brain Tumour magazine reported on HeadSmart in 2012, the campaign has won a major UK National Health Service Innovation Award of £100,000 for its work in significantly improving early cancer diagnosis. Lead HeadSmart clinician Professor David Walker from the Children’s Brain Tumour Research Centre in Nottingham, UK said: “We are delighted to have won this prestigious award, which recognises the considerable impact of HeadSmart Be Brain Tumour Aware campaign on public awareness of the symptoms of brain cancer in children in the UK, and beyond. Brain cancer is the biggest cancer killer for children and adults under 40 years of age. Delays in diagnosis for children and young people are a particular clinical problem as the symptoms are similar to other common children’s illnesses, and are affected by age and

behaviour changes associated with growth and development.” Professor Walker added: “We believe that accelerating diagnosis will significantly contribute to measurable improvements in outcomes for this vulnerable childhood group in due course. It is currently too soon to expect to measure these. We will be looking for reductions in early deaths and disability as well as enhanced confidence in the NHS in this area of paediatric practice. The Campaign will have on-going evaluation to measure these aspects and the prize money will be very helpful to assist with this.” Since HeadSmart’s launch, the campaign has attracted considerable interest. HeadSmart has been presented widely at professional meetings and conferences, as well as being discussed in the UK and European Parliaments. It has attracted international interest resulting in programmes using similar methods being established in Germany, Denmark, Sweden, Italy and Iran. n


Il Fondo di Gio

On 17th November 2012, the Italian organisation Il Fondo di Gio ONLUS held a conference in Trieste (where they are based) on pediatric brain tumours. The conference took place at the Savoia Excelsior Palace Hotel. The conference was divided into four sessions: “What do we do for those who it is not possible to cure?”;

“Tissue bio-banking as a tool for basic and translational research in pediatric brain tumours”; “A molecular portrait of pediatric brain tumours”; and “Treatment of pediatric brain tumours: beyond the barrier”. As well as medical professionals, over 100 non-professional people attended the meeting. The conference also marked the ten year anniversary of Il Fondo di Gio which was established in October 2002 in memory of little Giovanni Scropetta who died of a brain tumour, age eight. Giovanni’s mother, Francesca Scropetta, who is the President of Il Fondo di Gio, said: “Hope and determination led me and my husband to become involved in this way. When I see the same sweet smile of my brave son on the face of other brave

Above: Participants at the Il Fondo di Gio conference in Trieste, Italy listen to one of many presentations about pediatric brain tumours

children and adults coping with brain cancer, in the name of hope, then I feel satisfaction from my work.” n For more information about Il Fondo di Gio, please visit their website at: http://www.ilfondodigio.it

From the IBTA E News October 2012 ESMO play: Satire is a difficult art form. In Vienna recently officials of the European Society of Medical Oncology (ESMO) arranged for a short play to be performed during its conference which contained a grotesque parody of three types of patient: one who, as if in a trance, continuously murmured New-Age type chants throughout the consultation (the patient with a complementary and alternative medicine approach); one patient (presumably the aggressive type) who was accompanied by a medico-legal lawyer who bullishly insisted on taping the consultation; and one patient who repeatedly harangued the doctor with her scientific knowledge. All three were diagnosed with cancer. The doctor (a research professor at a well-known, but thinly veiled, London cancer hospital) had contravened bureaucratic EU research rules (the play is set in the year 2084) and, in a scene reminiscent of George Orwell’s “1984”, had been sent to Room 101 for his miscreant activity. His punishment in Room 101? To have to see the three patients which, judging by the uproarious laughter and hearty applause from the several hundred health professionals in the audience, struck a chord. It was a severe embarrassment to the patient advocates who were present and not something that one would expect to find at similar conferences elsewhere. n

Providing Support and Raising Awareness of Brain Tumours in Ireland www.braintumourireland.com Email: info@braintumourireland.com

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Brain tumour organisations offering support and information* (*The IBTA cannot be held responsible for the content of other organisations’ websites included in the list below.) n Accelerate Brain Cancer Cure (United States)

n Angels Among Us (United States)

n Barbara di Stase Memorial Walk

Accelerate Brain Cancer Cure has a singular focus -

The Angels Among Us 5K and Family Fun Walk is a

(United States)

to hasten the discovery of a cure for brain cancer.

celebration of life, strength, courage and commitment. This

Raises funds for brain tumour research and support.

www.abc2.org

volunteer organization was established to support the

http://www.barbaradistase.com/About_Us.html

mission of hope at the Preston Robert Tisch Brain Tumor

n ACT Brain Tumour Network (Australia)

Center at Duke University (Durham, North Carolina).

n Ben and Catherine Ivy Foundation (United States)

The ACT BT support network meets on the 4th Sunday

http://dccc.convio.net/site/ PageServer?pagename=angels_home

The objective of the US-based Ben and Catherine Ivy

of the month at Woden Southern Cross Club, Canberra. Convened by Susan Pitt and MaryAnne Rosier under the

Foundation is to cure brain cancer, while our immediate goal is to improve diagnostics and treatment that will lead

auspices of Brain Tumour Alliance Australia (BTAA).

n Anna’s Hope (United Kingdom)

to the doubling of life expectancy of patients with brain

Email vicechair@btaa.org.au Freecall 1800 857 221 (free from landlines in Australia)

Anna’s Hope is a charity dedicated to giving hope to

cancer within the next seven years.

children and young people diagnosed with a brain tumour.

www.ivyfoundation.org

It was inspired by Anna Olivia Hughes who tragically died from a brain tumour aged only three years and eight

n Benny’s World (United States)

n Addi’s Faith Foundation (United States)

months and was set up by Anna’s parents, Rob and Carole

Benny’s World is a 501(c)(3) non-profit foundation

This foundation was created to help fund pediatric brain

Hughes and her five Godparents in 2006.

established to fund research to find a cure for pediatric

tumor research as well as provide financial assistance to

www.annashope.co.uk

brain stem tumors, specifically targeting Diffuse Intrinsic

families who need help caring for their sick child.

Pontine Glioma (DIPG). Benny Watters was diagnosed with

www.addisfaithfoundation.org n Adult Brain Cancer Support Association

n ARTC Sud (France)

a DIPG on January 18th, 2008 a few months before his 3rd

Ce site s’adresse à tous ceux qui souhaitent s’informer sur

birthday. On September 8th, 2010 after 33 months battling

les tumeurs cérébrales cancéreuses et sur la recherche

his tumor, our sweet Benny passed away. This foundation

(Australia)

en neuro-oncologie et à ceux qui désirent faire progresser

was established in March 2008 by his family.

The ABC Support Association is located in South Australia

cette recherche.

http://www.bennysworld.org/

and is focussed on giving support, encouragement, help

www.artcsud.fr n Beyin Tumori Tedavisi (Turkey)

and guidance to adults diagnosed with brain cancer, their families, friends and carers.

Contact: Andy Stokes. andy.stokes@sa.gov.au

n Association Española de Afectados por Tumores Cerebrales - ASATE

Turkish brain tumour support group.

www.beyintumoru.org

(Spain)

n Adult Ependymoma (Web-based)

Spanish association for people affected by a brain tumour,

n Brad Kaminsky Foundation (United States)

A website dealing primarily with adult ependymomas.

based in Madrid.

The Brad Kaminsky Foundation seeks to raise awareness

https://sites.google.com/site/adultependymoma

http://www.asate.es/

of brain tumors, to raise funds for research, and is also

n Alinoe (France)

n Association Léa Princesse Eternelle

affected by this disease.

Alinoe (Association Lilloise de Neuro-Oncologie) is a local

(France)

www.tbkf.org

organisation (in the Lille are of north France) whose efforts

Léa est notre fille décédée le 10 juillet 2007 à l’âge de

are wholly directed to support, information and advice for

5 ans 1/2 des suites d’une tumeur cérébrale récidivante

n Brain and Spine Foundation (United Kingdom)

people with brain tumours and their families.

: l’épendymome (cancer pédiatrique). A l’issue des deux

The Brain and Spine Foundation is a registered charity

www.alinoe.asso.fr

années de maladie, nous gardons tous dans nos pensées

which is funded almost entirely by voluntary donations and

l’image d’une petite fille souriante, joueuse, courageuse

is committed to providing reliable information and support

n Ali’s Dream (United Kingdom)

et généreuse. Afin de poursuivre son combat contre la

to people living with neurological conditions across the UK.

A UK-based charity established to raise funds for research

maladie, nous, parents de Léa, avons décidé de créer

www.brainandspine.org.uk

into childhood brain tumours.

l’association «Léa Princesse Eternelle».

www.alisdream.f2s.com n American Brain Tumor Association

http://leapourlavie.free.fr/ n Astro Brain Tumour Fund

n Brain Candy Project (United States)

(United States)

(United Kingdom)

children who are recovering from brain tumours and other

Founded in 1973 out of a desperate need, the American

A UK organisation offering information, inspiration and hope

brain traumas.

Brain Tumor Association exists to eliminate brain tumors

to all those living with a low-grade brain tumour.

through research and to meet the needs of brain tumor

www.astrofund.org.uk n Australian Pituitary Foundation

www.braincandyproject.org n b.r.a.i.n.child (Canada)

dedicated to providing support and resources to those

patients and their families.

www.abta.org n Andrew McCartney Trust Fund (United Kingdom)

108

The Brain Candy Project aims to support the needs of parents/guardians living in the hospital with their critically

b.r.a.i.n.child is a group of parents, family, and friends who

The APF’s mission is to provide support to those who

have the common experience of caring for a child with

have experienced pituitary gland conditions. We promote

a brain tumour or who are survivors. We are a volunteer

Funds scientific and medical research into the causes

awareness and disseminate information among the

organization providing support, education, and research

of brain tumours, and builds public awareness of the

medical community, public, pituitary patients and

funding.

challenges of this disease.

their families.

www.andrewmccartneyphotos.co.uk

http://www.pituitary.asn.au/

http://www.sickkids.ca/Brainchild/What-We-Do/ index.html

Brain Tumour


n BrainLife

n Brain Tumour Action

(Web-based)

(United Kingdom)

n Brain Tumour Research and Support Across Yorkshire – incorporating Andrea’s Gift

BrainLife collects and offers to brain tumor patients,

Based in Scotland, Brain Tumour Action aims to provide

(United Kingdom)

caregivers and medical/health professionals, references to

information, support and counselling to brain tumour

Brain Tumour Research and Support across Yorkshire aims

the latest published medical sources in the field of brain

patients and patients’ friends and families.

to provide a network of support across Yorkshire for brain

(and other CNS) tumor research and treatment. Information

www.braintumouraction.org.uk

tumour patients and their families. In 2003 Andrea’s Gift

is from peer-reviewed journals and medical databases.

registered as a charity with the sole aim of funding research

Some meeting proceedings are included too. The sources

n Brain Tumour Ahoy Hoy (Australia)

and providing improved patient support for anyone affected

(abstracts, references and full-text articles) are republished

Brain Tumour Ahoy Hoy’s mission is to provide information,

by a brain tumour in Yorkshire. The charity changed its

with their original contents.

support and awareness for patients, friends and family who

name from Andrea’s Gift to BTRS in 2011.

www.brainlife.org

have or have previously had a low grade brain tumour. Let

http://www.btrs.org.uk/

us provide you a safe harbour to drop anchor, where you

n Brain Science Foundation

can laugh, cry and just be yourself.

(United States)

http://www.braintumourahoyhoy.org/

The Brain Science Foundation works to find a cure for

n Brain Tumour Support Group Cancer Council Queensland (Australia)

primary brain tumors by advancing the understanding of

n Brain Tumour Alliance Australia

This brain tumour support service provides information

brain function and patient care. The foundation supports

Brain Tumour Alliance Australia (BTAA) is the only national

about brain tumours and treatments; referral to support

cutting edge research in all areas related to primary brain

brain tumour patient and caregiver organisation in Australia.

and rehabilitation services as well as practical and financial

tumors, from developing and testing new treatments,

assistance; and regular meetings that give opportunities to

and basic research.

www.btaa.org.au n Brain Tumour Association (Western Australia)

http://www.brainsciencefoundation.org

The Brain Tumour Association (Western Australia) is a

http://www.cancerqld.org.au/page/need_support/ support_programs/brain_tumour/

epidemiological studies, improvements in patient care,

support group for patients and caregivers.

meet other people dealing with a brain tumour and hear health professionals discuss topics of interest.

n Brain Tumor Awareness Organization

www.braintumourwa.com

(United States)

n Brain Tumour Barcelona (Spain)

n Brain Tumour Support Group St Thomas’ Hospital, London

The Brain Tumor Awareness Organization is an on-line

This Spanish brain tumour support group has been started

(United Kingdom)

resource for raising brain tumor awareness and

recently by Elisabeth Ros, a medulloblastoma survivor, with

Everyone is welcome to join this brain tumour support

gaining support.

the collaboration of Fondo Alicia Pueyo (a fund for research

group in London to be held at the Dimbleby Cancer

www.braintumorawareness.org

on childhood brainstem gliomas).

Centre in St Thomas’ Hospital, London, UK. This group

Contact Elisabeth Ros at elisabethrosmansilla@ yahoo.es

meets on the first Monday of each month and is aimed

n Brain Tumor Foundation for Children Inc

at patients, families and friends of those diagnosed with a brain tumour.

(United States)

n Brain Tumour Foundation of Canada

The Brain Tumor Foundation for Children Inc is a Georgia

The Brain Tumour Foundation of Canada is the major non-

(US) based support, information and fund-raising

governmental brain tumour organisation in Canada and

organisation for children with brain tumors.

aims to reach every person in Canada affected by a brain

For more information contact Jamie Logan on 020 3229 4151. n Brains Together for a Cure

www.braintumorkids.org

tumour with support, education and information

(United States)

and research.

Our mission is To promote awareness of brain tumors and

n Brain Tumor Fund for the Carolinas

www.braintumour.ca

the need for effective treatments.

(United States)

n Brain Tumour Foundation of India

The Brain Tumor Fund for the Carolinas (BTFC), is a

The Brain Tumour Foundation of India is a charity

n Brainstrust (United Kingdom)

not-for-profit organization founded in 2003 by

concerned with improving the care and treatment available

Brainstrust is dedicated to improving clinical care for brain

Charlotte neurosurgeon, Dr. Tony Asher and retired

to people with brain tumours and their families. They work

tumour sufferers and providing co-ordinated support in

Bank of America executive, Jim Palermo. The Brain

in partnership with other organisations to develop and

their search for treatment. Brainstrust has also developed

Tumor Fund for the Carolinas is dedicated to

support services for people with brain tumours. They hope

the “braintumourhub” at www.braintumourhub.org.uk

increasing public awareness of the impact of

to help all patients in and around Bombay and expand

which is an online database of brain tumour support

brain tumors and to providing support for the

their services to involve the whole country.

and brain tumour advice services available nationally in

development of treatment strategies and

www.braintumourindia.org

the UK.

tumors in the Charlotte region.

n Brain Tumour Ireland

http://www.btfcnc.org/about/overview.cfm

The goals of Brain Tumour Ireland are : to raise awareness

www.brainstrust.org.uk n Brainwaves Brain Tumour Support Group

http://www.brainstogetherforacure.org/about.asp

cooperative biomedical research related to brain

of and promote education about brain tumours; to provide

(United Kingdom)

n Brain Tumor Resource and Information Network – B.R.A.I.N.

information and support to brain tumour patients and their

Brainwaves offer the opportunity to meet other people with

families/friends; and to promote and fund medical research

similar experiences and to find out information about all the

(United States)

on the topic of brain tumours in Ireland and abroad.

issues relating to brain tumours.

Brain Tumor Resource and Information Network

http://www.braintumourireland.com/bti/

Email: audrey.hopwood@uhl-tr.nhs.uk

dedicated to improving the quality of life of brain

n Brain Tumour Research (United Kingdom)

n Brainwaves NI

tumor survivors, increasing public awareness, and raising

Brain Tumour Research specifically funds brain tumour

(Northern Ireland)

funds to aid in research to eliminate the disease.

research at UK centres to accelerate progress and improve

Brainwaves NI provides support and information to those

They are based in the Richmond, Virginia area.

patient treatments and outcomes.

people affected by a brain tumour, their families and carers.

www.brainsite.org/index.html

www.braintumourresearch.org

www.brainwaves-ni.org

(B.R.A.I.N) is a volunteer non-profit 501(c)3 organization

Brain Tumour

109


n Brian Bedell 2 Young Foundation

n CHANCE - Children AgaiNst CancEr (Lebanon)

n Dr Marnie Rose Foundation (United States)

(United States)

CHANCE (CHildren AgaiNst CancEr) is a Lebanese association

The Dr Marnie Rose Foundation funds brain tumour

The 2 Young Foundation was founded in 2004 by Brian

whose mission is to help Lebanese children with cancer or

research at MD Anderson in Houston, Texas (USA).

Bedell and continues to grow each year in his honor. 2YF is

blood disorders receive the best chance for cure and accept

http://www.runfortherose.com/?id=235

a non-proft (501c3) charitable organization that is dedicated

their disease.

to caring for families and patients affected by brain tumours,

http://chancelebanon.org/about-chance/

committing funds to further research in curing this disease.

http://www.2yf.org

n Ed Evans Foundation (United Kingdom) The Ed Evans Foundation, in memory of 27 year old Ed

connecting communities to generate public awareness, and

n Charles Warren Brain Tumor Awareness Foundation (United States)

Evans who passed away in 2007, is based in Wales, UK,

The Charles Warren Brain Tumor Awareness Foundation,

www.edevansfoundation.co.uk

and raises funds for cancer and brain tumour charities.

n British Acoustic Neuroma Association - BANA

based in Georgia, USA, seeks to “significantly raise

(United Kingdom)

awareness of the disease of brain tumors so that a cure

n Ellie Savage Memorial Trust

BANA is organised and administered by people affected

can be found more quickly”. It directly supports the Preston

(United Kingdom)

by acoustic neuroma; is a registered charity and exists for

Robert Tisch Brain Tumor Center at Duke University.

The Ellie Savage Memorial Trust has been founded to help

mutual support, information exchange and listening

www.charleswarrenfoundation.org

families living in East Anglia (UK) who have a child with

www.bana-uk.com n BT Buddies

n Charlie’s Challenge (United Kingdom)

(United Kingdom)

money to finance urgently needed research into children’s

n Emory Brain Tumor Support Group

A national charity committed to providing information and

brain tumours.

(United States)

support to anyone affected by a high grade brain tumour

www.charlieschallenge.com

The Emory Brain Tumor Support Group (Georgia, USA)

cancer or a brain tumour by providing financial support.

provides an opportunity for information-sharing and support

in the UK..

www.btbuddies.org.uk

http://www.elliestrust.org/

Charlie’s Challenge is a UK-based charity which raises

n Childhood Brain Tumor Foundation

among patients diagnosed with a brain tumor, be it

(United States)

malignant, benign or metastatic.

n BT Survivor group

The CBTF’s mission is to raise funds for scientific research

www.neurosurgery.emory.edu/BTSG/contact.htm

(Web-based)

and heighten public awareness of brain tumours and to

A site dedicated to discussing survivorship, treatment

improve prognosis and quality of life for those who

n Ependymoma Online Support Group

options available now and those options on the horizon

are affected.

(Web-based)

that show promise.

The Adult Ependymoma Online Support Group is a private

www.btsurvivor.com

www.childhoodbraintumor.org n Childrens Brain Tumor Foundation (United States)

n California Brain Tumor Association

The NY-based CBTF, founded in 1988, seeks to “improve

is consistent with the rarity of ependymomas in adults.

(United States)

the treatment, quality of life and the long term outlook for

Our tight-knit, online community is a strong emotional and

The California Brain Tumor Association is dedicated to

children with brain and spinal cord tumors...”

medical support system.

advancing brain cancer research efforts, employing the

www.cbtf.or n Chris Elliot Fund for Glioblastoma Brain Tumor Education, Awareness, Advocacy and Research

http://www.braintrust.org/adultependymoma.htm

n Canadian Alliance of Brain Tumour Organisations

(United States)

research and support activities in honour of 20 year old

The Canadian Alliance of Brain Tumour Organizations

The Chris Elliott Fund for Glioblastoma Research (CEF) is a

Lauren M Fitzgerald who passed away in 2005. Funds

(CABTO) is an alliance of volunteer organizations, dedicated

non-profit organization that raises funds specifically aimed

are administered through the Berks County Community

to enhancing the quality of life of brain tumour patients

at ending brain cancer through education, awareness,

Foundation.

and families.

advocacy and research.

http://bt-family.org/lauren/lauren.htm

http://cabto.braintumour.ca/

www.chriselliottfund.org

n Central Brain Tumor Registry of the United States

n Clowns in the Sky (United Kingdom)

(United States)

Clowns in the Sky is a small, registered charity which

Our mission is to provide hope, support and education to

The Central Brain Tumor Registry of the United States,

supports children with brain tumours and their families

brain tumor survivors, their families and friends; to conquer

CBTRUS, is a not-for-profit corporation committed to

across England. They provide activity and portable sensory

brain tumors by funding research into their causes and

providing a resource for gathering and disseminating current

trolleys in oncology wards and shared-care units in

cures; and to enrich the quality of life of those touched by

epidemiologic data on all primary brain tumors, benign

many hospitals.

brain tumors.

and malignant, for the purposes of accurately describing

http://www.clownsinthesky.org/

www.floridabraintumor.com/

and treatment, facilitating etiologic studies, establishing

n Cyprus Brain Tumour Association

n Fondo Alicia Pueyo (Spain)

awareness of the disease, and ultimately, for the prevention

The CBTA is a brain tumour organisation for patients and

This Spanish organisation was created with the mission

of all brain tumors.

families.

to promote and support research on childhood brainstem

http://www.cbtrus.org/

Contact: masolomou@hotmail.com

tumors in order to develop new treatments and drugs

n Central New Jersey Brain Tumor Support Group – CNJBTSG

n Deutsche Hirntumorhilfe eV (Germany)

terrible disease.

A non-profit, German-based independent organisation,

www.fondoaliciapueyo.org/e_inicio.php

(United States)

which raises funds for the advancement of neuro-

Meets in North Plainfield, New Jersey. For further information

oncological research and the improvement of medical

n GentleGiant (United Kingdom)

see website.

health care for brain tumour patients

GentleGiant UK is a website devoted to pituitary tumours.

www.njbt.org/startCNJBTSG.cfm

www.hirntumorhilfe.de

www.gentlegiant.co.uk

precautionary principle, outreach, and education.

http://www.cabta.org/

email list consisting of over 100 patients and caregivers. The group is hosted by T.H.E. Brain Trust. The size of this group

n Fitzy’s 5 km Run/Walk (United States) This annual run/walk raises funds for brain tumor

n Florida Brain Tumor Association

their incidence and survival patterns, evaluating diagnosis

that may offer an early cure for all children affected by this

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Brain Tumour


n Gerry and Nancy Pencer Brain Tumor Centre

n Healing Exchange Brain Trust

n Jeffrey Thomas Hayden Foundation

(Canada)

(United States)

(United States)

The Gerry and Nancy Pencer Brain Tumor Centre is

Provides support services for people affected by brain

The Jeffrey Thomas Hayden Foundation is a registered non-

dedicated to improving the lives of people living with

tumors and related conditions.

profit 501c(3) US-based organization dedicated to helping

brain tumours.

www.braintrust.org n Hersentumor.nl

kids affected by cancer.

(The Netherlands) A patient-oriented organisation in the Netherlands whose

n Joe di Palma Brain Tumor Foundation

(United States)

aim is to prevent and cure brain tumours.

(Canada)

The US-based Glio-Blastoff 5K Fun/Walk has been created

www.hersentumor.nl

The Joe Di Palma Brain Tumor & Pediatrics Foundation is

http://www.uhn.ca/about_uhn/programs/pencer/ who_we_are.asp n Glio Blast Off

www.jthf.org/default.asp

dedicated to raising money for charities that are focused on

to raise money for brain tumour research.

www.braincancer5k.com/index.html n Glioblastoma Fundation Michèle Esnault - GFME

n Hjernesvulstforeningen

helping adults and children with brain tumors.

(Norwegian Brain Tumour Association/NBTA)

http://www.joedipalmafoundation.com/index.htm

(France)

providing brain tumour patients, their families and

n Just One More Day

Glioblastoma Fundation Michèle Esnault (GFME) is a French-

caregivers in Norway with information and support.

(United States)

speaking group for brain tumour patients.

Hjernesvulstforeningen er til både for pasient og pårørende.

Just One More Day is committed to providing information

http://gfme.free.fr/

Vi etablerte i januar i år en kontakttelefon, der du kan

and support for families affected by diffuse intrinsic

snakke med folk som selv har eller har hatt hjernesvulst, og

pontine glioma.

n Glioma Online Support Group

med pårørende.

www.justonemoreday.org

(Web-based)

www.hjernesvulst.no

The NBTA was created in 2009 and is a national group,

n kartu lengviau

The international forum dedicated to those affected by low grade gliomas.

n Hjernetumornet.dk

(Lithuania)

http://health.groups.yahoo.com/group/ gliomasupport/?yguid=225403349

(Danish Brain Tumour Association)

The first and the only Internet page and support

Vi er et netværk for patienter der har og har haft

group for brain tumour patients and their carers

hjernetumor og deres pårørende. Her har du mulighed for

in Lithuania.

n Gray Matters Foundation (United States)

at udveksle erfaringer med og få støtte fra andre der står i

www.kartulengviau.lt/joomla/pradzia.html

The Gray Matters Foundation is a 501(c)(3) organization

tilsvarende situation.

whose mission is to support and empower people

http://www.cancer.dk/hjernetumornet/

n Katie McKerracher Trust (United Kingdom)

impacted by brain tumors through outreach, awareness and assistance programs.

n Il Fondo di Gio ONLUS

Katie’s Trust wants to help children with a diffuse

www.graymattersfoundation.com

(Italy)

pontine glioma by supporting patients and parents with

Il Fondo di Gio ONLUS is an Italian brain tumour charity

finance and advice, providing access to healing/alternative

n Grey Matters (Australia)

named in honour of Gio, the young son of Francesca

therapy and investigating/ supporting research. The

A new support group for those living with a benign and low

Scropetta, who passed away from a brain tumour.

Trust also provides some financial assistance to

grade brain tumour. Grey Matters is affiliated with Cancer

www.ilfondodigio.it

dancers from the Scottish Borders studying dance in higher education.

Council Victoria and associated with Melbourne Hospitals (including Royal Melbourne and The Austin).

n IRENE Onlus

thegreymatters01@gmail.com

(Italy)

www.katiemckerracherstrust.co.uk

n Hammer Out (United Kingdom)

per iniziativa di pazienti e familiari di persone affette da

n Kevin J Mullin Memorial Fund for Brain Tumor Research

Hammer Out provides support to those affect by a brain

tumori cerebrali. Obiettivo dell’Associazione IRENE è quello

(United States)

tumour diagnosis, along with their families and friends.

di aiutare le persone che hanno ricevuto una diagnosi di

The Kevin J. Mullin Memorial Fund for Brain Tumor

www.hammerout.co.uk

tumore cerebrale e i loro familiari, ad affrontare i problemi

Research, based in the USA (Lancaster, Ohio), conducts

sia di natura sanitaria che psicologica e sociale che questa

an annual 5 km run/walk from which the proceeds go to

n Headcase (United Kingdom)

diagnosi comporta....

brain tumor research.

Headcase raises funds to provide research to find a cure

http://www.associazioneirene.it/

www.lemonhead.org/Home.aspx

n Italia - Glioblastoma Multiforme cancro al cervello

n Kortney Rose Foundation

(Web-based)

The Kortney Rose Foundation is a 501(c)(3) organization

n Head for the Cure Foundation

Italian glioblastoma Facebook website.

that is dedicated to raising funds to support research and

(United States)

www.facebook.com/group.php?v=info&ref=ts&g id=42437508756

education related to the treatment and cure of pediatric

L’associazione IRENE Onlus è stata fondata alcuni anni fa

for the most common and aggressive type of adult brain tumour called a Glioblastoma Multiforme or GBM.

http://www.headcase.org.uk/12.html

The Head for the Cure Foundation is a 501(c)3 nonprofit

(United States)

brain tumors.

the fight against brain cancer.

n Japan Brain Tumor Alliance

http://www.headforthecure.org/

Assisting brain tumour patients and families in Japan.

www.thekortneyrosefoundation.org/index.shtml n Legacy Brain Foundation

www.jbta.net

(United States)

organization dedicated to raising awareness and funding in

n Head Start (New Zealand)

Our Mission is to support patients with brain or spinal

This organisation is intended to give sufferers in New

n Japan Pediatric Brain Tumor Network

cord tumors in their communities through public

Zealand a “head start” when they are battling brain

Helping pediatric brain tumour patients and their families

awareness, education, grants and services; creating a

tumours.

in Japan.

better quality of life for patients and their families.

www.headstart.org.nz/Site/Default.aspx

www2.pbtn.jp

http://www.legacybrainfoundation.com/

Brain Tumour

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n Levi’s Star (United Kingdom)

n Meningioma UK

n Newro Foundation (Australia)

Levi’s Star works to relieve the sickness and distress of

The only UK organisation for support and information

The Newro Foundation is a not-for-profit organisation

children suffering from brain tumour within the Yorkshire

for patients with meningioma tumours of the brain and

and registered charity seeking to develop new ideas and

Health Authority Cancer Centres.

spine. Thirty per cent of all primary brain tumours are

new research for new hope in the fields of neurology,

http://www.freewebs.com/levisstar/

meningioma tumours.

neurosurgery, spinal surgery and the neurosciences.

www.meningiomauk.org Making Headway Foundation Inc. is a US (Chappaqua, NY)

n Michael G. Belz Foundation

based not-for-profit organization dedicated to the care,

(United States)

http://www.newrofoundation.com.au/ n Nick Gonzalez Foundation for Brain Tumor Research (United States)

comfort, and cure of children with brain and spinal

This US group seeks to create hope, helping to live and

he Nick Gonzales Foundation for Brain Tumor Research

cord tumors.

celebrate life after diagnosis. They educate, offer emotional

was established in 2007 in honor of Nick, a loving

www.makingheadway.org

support and provide resources.

husband, father, son, brother, friend and so much more. The

www.mgbf.org/index.php

Foundation concentrates on raising public awareness of the

n Making Headway (United States)

n Mark Linder Walk for the Mind

early warning signs of brain tumours and it also focuses on

Mark’s goal was to create a place where brain tumor

n Michael Quinlan Brain Tumor Foundation/Brain Injury Association of Kentucky (United States)

survivors and those still fighting the battle can come and

The Michael Quinlan Brain Tumor Foundation has merged

support one another in this battle...Mark founded the Walk

with the Brain Injury Alliance of Kentucky (BIAK).

n Oklahoma Brain Tumor Foundation (United States)

for the Mind in 2003. The Walk is a way to unite those

www.biak.us n Monmouth and Ocean County Brain Tumor Support Group

OKBTF is dedicated to meeting the needs of Oklahoma

(United States)

individuals and their families as well as to raise funds to support brain tumor research in hopes to find a cure.

http://www.marklinderwalkforthemind.com/

http://www.nickgonzalesfoundation.org/

families, caregivers and patients affected by primary brain or central nervous system tumors.

n mASS Kickers (United States)

The Monmouth and Ocean County Brain Tumor

mAss Kickers Foundation (MKF) is a 501(c)(3) non-profit

Support Group is a US-based (New Jersey) brain tumor

www.okbtf.org n Pediatric Brain Tumor Foundation of the United States

organization, which provides support and motivation to

support group.

The Pediatric Brain Tumor Foundation® (PBTF) is a 501(c)(3)

all newly-diagnosed patients, family, and friends affected

www.njbt.org/startMOCBTSG.cfm

nonprofit charitable organization that seeks to: find the cause

(United States)

by tumors or cancer. MKF serves this mission through its

of and cure for childhood brain tumors by supporting medical research; increase public awareness about the severity

Founded by brain tumor patient Dr Eric Galvez.

n Musella Foundation - Virtual Trials.com - Clinical Trials and Noteworthy Treatments for Brain Tumors

http://www.masskickers.org/

(United States and Web-based)

detection and treatment of childhood brain tumors; support

Regarded as one of the most comprehensive brain tumor

a national database on all primary brain tumors; provide

websites in the English-speaking language.

educational and emotional support for children and families

www.virtualtrials.com

affected by this life-threatening disease.

The Matthew Larson Pediatric Brain Tumor Research

n Naseem’s Manx Brain Tumour Charity

Foundation seeks to raise the awareness and funds

(United Kingdom)

www.pbtfus.org/index.htm n Pediatric Low Grade Astrocytoma Foundation

needed to overcome pediatric brain tumors and to help the

Our aim is to support Isle of Man residents who are

(United States)

children and families affected by them.

suffering with a brain tumour by way of giving them

The US-based Pediatric Low Grade Astrocytoma Association

www.ironmatt.org

financial support and providing the latest information about

(PLGA) seeks to raise awareness, funding, and find a cure

brain tumours.

for this disease.

http://www.naseemsmanxbraintumourcharity. co.uk/index.html

www.fightplga.org n Philippines Brain Tumour Alliance

the general public and to raise money for pediatric

n National Brain Tumor Society

We are committed to improving the lives of those affected

brain tumor research in hope of finding a cure for this

(United States)

by brain tumors. Educating and empowering the patients

devastating illness.

The National Brain Tumor Society is a nonprofit

and their families to improve the quality of their lives.

http://www.matthewsmiles.org/

organization inspiring hope and providing leadership

http://www.facebook.com/pages/Philippine-BrainTumor-Alliance/139492062749160?sk=info

website, fund-raising, and select events throughout the year.

n Matthew Larson Pediatric Brain Tumor Research Foundation (United States)

n Matthew’s Miles (United States) Our mission is to raise brain tumor awareness in

within the brain tumor community. We exist to find a

and prevalence of childhood brain tumors; aid in the early

n Meagan’s Walk: Creating a Circle of Hope

cure and improve the quality of life for those affected by

(Canada)

brain tumors. We fund strategic research, deliver support

n PPR Foundation (United Kingdom)

Meagan’s Walk, held annually on US Mother’s Day, raises

services, and promote collaboration.

We are committed to raise £1 million by 2015 to fund Brain

awareness about paediatric brain tumours and funds for

www.braintumor.org

Tumour Research. We will support various research projects

research. Participants conclude the walk with a circle around

aimed at possible causes, cures, treatments or effects thereof.

SickKids Hospital, Toronto, Canada.

n Neuro-Oncology Information Network - NOgIN

www.meaganswalk.com

(Australia)

http://www.thepprfoundation.com/

NOgIN is a not for profit organisation whose mission is

n ROC On! (United States)

n Meningioma Mommas

dedicated to reducing the physical and emotional impact

ROC On! (Run Over Cancer) was developed by Laurie

(United States)

associated with the diagnosis and ongoing

Dangler, M.D., brain cancer patient, to organize people to

Meningioma Mommas is a 24/7 online support group for

treatment of patients with a brain tumour. It aims to

run or walk all or half of the Columbus Marathon and raise

all those affected by meningioma brain tumors. The non-

improve outcomes for patient’s and their families living in

funds for research at The Ohio State University’s Arthur G.

profit organization is also committed to raising funds for

western Sydney..

James Cancer Hospital.

meningioma specific research.

http://www.sydneybrainandspinesurgeons.com. au/nogin.html

www.facebook.com/pages/ROC-on-Run-OverCancer/310235803819

www.meningiomamommas.org

112

supporting brain tumour research.

Brain Tumour


n San Diego Brain Tumor Foundation (United States)

n Tanner Seebaum Foundation (United States)

n United Brain Tumour Support

The San Diego Brain Tumor Foundation (SDBTF) was created

Based in Centennial, Colorado, Tanner Seebaum

(Australia)

to support the brain tumor community in San Diego (USA).

Foundation’s mission is to positively impact the lives of

Located on the Gold Coast, Australia.

www.sdbtf.org

children with tumors of the brain and spine through funding

Contact Pete McLaughlin: (Australia) 0422 784 885

and supporting viable medical research that will lead to

n Sontag Foundation (United States)

more effective treatment options and ultimately a cure.

The Sontag Foundation, a private American foundation,

www.tannersfoundation.org

n Voices Against Brain Cancer (United States)

seeks to improve the lives of brain tumor patients by funding brain tumor medical research. Their grants support

n Team Billy (United States)

Our mission is to find a cure for brain cancer by advancing

the work of outstanding early career scientists in the US

This organisation’s mission is to foster public support

scientific research, increasing awareness within the medical

and Canada. They also assist a brain tumor patient support

of a vision of a world where brain tumors no longer exist as

community and supporting patients, their families and

group in Jacksonville, Florida.

a deadly and debilitating illness. They also fund

caregivers afflicted with this devastating disease.

http://www.sontagfoundation.com n Sophie’s Wish (United Kingdom)

medical research.

www.voicesagainstbraincancer.org

Sophie’s Wish aims to raise awareness of brain tumours,

n Teenage Cancer Trust (United Kingdom)

(United States)

their symptoms, diagnosis and treatment. We also

The Teenage Cancer Trust (TCT) is a charity dedicated to

Walk for Kate was founded in June 2010 as a nonprofit

campaign for and raise much needed funds for further

improving the lives of teenagers and young adults with

501(c)3 corporation dedicated to finding a cure for

research into brain tumours in order to help improve this

cancer. They fund and build specialist units for young

brain tumors. Our goals include advancing community

desperate survival rate.

people in National Health Service hospitals. TCT also

awareness and raising funds through walking (and

http://sophieswish.org.uk/about-us

provides specialist Nurse Consultants who provide clinical

running for those more adventurous among us) to further

care, develop research, deliver professional education and

brain tumor research.

n Southeastern Brain Tumor Foundation

ensure that standards remain as high as possible.

(United States)

www.teenagecancertrust.org

http://www.walkforkate.org/about.html n We Can Pediatric Brain Tumor Network

Atlanta, Georgia and seeks “to improve the quality of life for

n The Brain Tumour Charity (United Kingdom)

(United States)

brain tumor patients and their families”.

The Brain Tumour Charity funds scientific and clinical

We Can is a (Los Angeles, USA) parent-initiated pediatric

www.sbtf.org/home.html

research into brain tumour and offers information and

brain tumor network that offers information and emotional

support to those affected. It also raises awareness and

support to families with children who have brain tumors.

n Spinal Cord Tumour Forum (Web-based)

influences policy. The Brain Tumour Charity’s aim is to

www.wecan.cc/We_Can/Home.html

This is a website for people in the UK who have had,

improve the understanding, diagnosis and treatment of

or whose lives have been affected by, benign spinal

brain tumours.

n Werkgroep Hersentumoren vzw

cord tumours.

www.thebraintumourcharity.org n The Cure Starts Now Foundation (United States)

(Belgium)

The Cure Starts Now Foundation fights for the cure

of patients and their relatives, physicians, caregivers in the

A Dutch foundation established to raise public awareness

for children with brainstem glioma and cancer

broadest sense of the word, neurologists, neurosurgeons,

and funding for urgently needed brain tumor research to

survivors everywhere.

nurses, psychologists, social workers, etc.

find the cause and cure for this disease.

http://www.thecurestartsnow.org/ n Thorne Mason Trust (United Kingdom)

www.wg-hersentumoren.be/Welcome.php n Western North Carolina Brain Tumor Support

n Students Supporting Brain Tumor Research SSBTR (United States)

The Thorne Mason Trust provides support to suit the

(United States)

needs of individuals who have been affected by a brain

WNCBTS is a US-based (Asheville, North Carolina) adult

Our mission is to provide education and leadership

tumour or cancer in any way. These include services such

support group for brain tumor survivors, their families,

development to our youth, furnish a platform for them

as gardening, cooking, cleaning etc. We are also raising

and caregivers..

to play a principal role in effecting positive changes in

money to fund vital research into brain tumours. The

www.wncbraintumor.org

their communities, promote awareness of how common

Thorne Mason Trust’s long term aim is to open its own

brain tumors are as the leading cause of cancer deaths

complementary brain tumour and cancer care centre based

among their peers and act as outreach to support affected

in Pembrokeshire.

n Worcestershire Brain Tumour Support Group

individuals and their families.

http://www.thornemasontrust.com/

(United Kingdom)

http://www.teambilly.org/ n Walk for Kate and Blankets for Brains

The Southeastern Brain Tumor Foundation is based in

www.spinalcordtumour.org.uk n STOPhersentumoren.nl (The Netherlands)

www.stophersentumoren.nl

http://www.ssbtr.org/

Werkgroep Hersentumoren vzw - Study Group Brain Tumours Belgium - is a multiprofessional group consisting

The Worcestershire Brain Tumour Support Group (WBTSG)

n Tuberous Sclerosis Association (United Kingdom)

in the UK aims to offer information and support to anyone

n Svenska Hjärntumörföreningen (Sweden)

The Tuberous Sclerosis Association promotes awareness,

affected in any way by a brain tumour.

The Swedish Braintumour Foundation is a brain tumour

research and the best management of tuberous sclerosis

www.wbtsg.org

support and information group established in 2006.

complex and supports all affected individuals and families.

www.hjarntumorforeningen.se

http://www.tuberous-sclerosis.org

n Tali’s Fund (Canada)

n Tug McGraw Foundation (United States)

campaign for widespread knowledge on brain tumors, to

Tali’s Fund was set up in remembrance of four-year-old

The US-based Tug McGraw Foundation was established to

improve the quality of life for brain tumor patients and their

Tal Doron, who died from a brain tumor. The Fund raises

“raise funds for pioneering brain cancer research, increase

caregivers in Zimbabwe, through access to better care,

money for research projects at SickKids Hospital (Canada)

public awareness of the disease, and support college

improved facilities and treatment. They seek to instil hope

and helps provide emergency funds for families with a child

students who exemplify leadership and Tug’s inspiring ‘Ya

and strength through shared knowledge and support. The

undergoing treatment.

Gotta Believe’ spirit”.

ZBTA’s motto is: “achieving through hope and strength”

www.taldoron.com

www.tugmcgraw.org

zbta@mweb.co.zw

n Zimbabwe Brain Tumor Association The Zimbabwe Brain Tumor Association (ZBTA) seeks to

Brain Tumour

113


Other organisations and sources of information* (*The IBTA cannot be held responsible for the content of third party websites included in the list below.) n African Organisation for Research and Training in Cancer www.aortic.org

n Children’s Brain Tumour Research Centre

n Grupo Espanol de Investigacion en Neurooncologia

(United Kingdom)

(GENO - Spain)

www.cbtrc.org

www.geino.es/

n Chinese University of Hong Kong Brain Tumour Centre www.surgery.cuhk.edu.hk/btc

n Health EU portal - Cancer http://ec.europa.eu/health-eu/health_problems/ cancer/index_en.htm

(France)

n Collaborative Ependymoma Research Network (CERN)

www.artc.asso.fr/fr/index.htm

(United States)

n Italian Association of Neuro Oncology (AINO) www.neuro-oncologia.eu

n Aimee’s Army (United States)

www.aimeesarmy.com n Association pour la Recherche sur les Tumeurs Cerebrales

www.cern-foundation.org n Associazione Italiana per i Tumori Cerebrali (AITC)

n Jerry Kline

(Italy)

n Cure for Life Foundation

(United States)

www.tumoricerebrali.it

(Australia)

www.jerrykline.com

www.cureforlife.org.au n Brain Research Trust

n JimmyTeens TV

(United Kingdom)

n David M Bailey website

(United Kingdom)

www.brt.org.uk

(United States)

www.jimmyteens.tv

www.davidmbailey.com n Brain Tumor Center at Memorial Sloan-Kettering (United States)

www.mskcc.org/mskcc/html/70038.cfm n Brain Tumor Epidemiology Consortium (BTEC) www.epi.grants.cancer.gov/btec n British Journal of Neuroscience Nursing

n ECCO (European CanCer Organisation) Patient Advisory Committee www.ecco-org.eu/Patient-section/page.aspx/12

n BrizBrain and Spine

n European Association of Neuro Oncology (EANO) www.eano.eu

(Australia)

www.brizbrain.com.au n Canadian Brain Tumour Consortium www.cbtc.ca

n Preston Robert Tisch Brain Tumor Centre (United States)

n EudraCT - European clinical trials database https://eudract.ema.europa.eu/

(United Kingdom)

www.bjnn.co.uk

n OrphaNet www.orpha.net

n European Association of Neurosurgical Societies (EANS) www.eans.org

www.cancer.duke.edu/btc n Rare Cancers Europe (RCE) www.rarecancerseurope.org/ n RARECARE (Pan-European rare cancer initiative) www.rarecare.eu n Society for Neuro-Oncology (United States)

n Cancer World Magazine www.cancerworld.org/ n Cellular & Molecular Neuro-oncology Research Group, University of Portsmouth (United Kingdom)

www.port.ac.uk/research/ibbs/ cellularandmolecularmedicine/ cellularandmolecularneurooncology n Center for Analysis of Rare Tumors (Cartwheel - Australia)

n European Cancer Patient Coalition (ECPC) www.ecpc-online.org n European Organisation for Rare Diseases (Eurordis) www.eurordis.org

(Australia)

www.neuroendoscopy.info

114

Brain Tumour

n US National Institutes of Health clinical trials database www.clinicaltrials.gov n Wagner-Jauregg Hospital (Austria)

n European School of Oncology (ESO) www.eso.net/esonet/home.aspx?id_sito=1&id_ stato=1

www.cart-wheel.org n Centre for Minimally Invasive Neurosurgery

www.soc-neuro-onc.org

n European Society of Medical Oncology (ESMO) www.esmo.org n Gliogene Study www.gliogene.org/

www.wagner-jauregg.at n World Federation of Neuroscience Nurses (WFNN) www.wfnn.nu n Zentrum für NeuroOnkologie, Universität Regensburg (Germany)

www.braintumor.de


INTERNATIONAL BRAIN TUMOUR ALLIANCE

Please join us in 2013!

In 2012, there were 162 brain tumour relevant organisations which supported the IBTA’s two main projects of the:

INTERNATIONAL and the BRAIN TUMOUR AWARENESS WEEK These two projects are being repeated for the seventh year in a row in 2013. We are currently compiling our list of 2013 supporting organisations. Contact chair@theibta.org or kathy@theibta.org to become a supporter. The IBTA requires no financial commitment from your organisation to be a supporter.

YOUR SUPPORT OF THESE TWO POPULAR GLOBAL EVENTS WILL FURTHER HELP BRAIN TUMOUR PATIENTS TO DEAL WITH THE CHALLENGES THEY FACE.


Attack: anyone Causes: unknown Screening: unrealistic Prevention: impossible Treatment: improving

Urgently needed: more research and support International Brain Tumour Awareness Week: 27 October - 2 November 2013

INTERNATIONAL BRAIN TUMOUR ALLIANCE

www.theibta.org

!

BRAIN TUMOURS

Brain Tumour Magazine: World Edition 2013  

The fourth annual edition of the official magazine of the International Brain Tumour Alliance (IBTA).

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