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World Edition 2015/16

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

The International Brain Tumour Alliance at ten... advocating, raising awareness and strengthening links around the world GREATER COLLABORATION n GREATER KNOWLEDGE n GREATER HOPE

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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 2015 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 (25th to 31st October 2015) 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 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


Contents WORLD EDITION 2015/16 n Meet the IBTA team . . . . . . . . . . . . . . . . . 6 n Our vision, mission, purpose, values and principles . . . . . . . . 7 n 2014 - The IBTA year in review . . . . . . . . 8 n The World Federation of Neuro-Oncology Societies (WFNOS) by Professor Dr Michael Weller, Dr Manuel Mariano, Dr David Reardon. . . 13 n When the doctor becomes a brain tumour patient by Dr Stuart Farrimond. . . . . . . . . . . . . . 14 n An interview with Dr M Kelly Nicholas. . 16 n Camp Jinka by Judy Zocchi. . . . . . . . . . . . . . . . . . . . . 18 n Long-term survival in glioblastoma a project of the Brain Tumor Funders’ Collaborative by Professor Dr Michael Weller and Dr Caroline Happold. . . . . . . . . . . . 20 n Living with gliomatosis cerebri my six year journey by Nilay Ayan . . . . . . . . . . . . . . . . . . . . . 22 n Keep on walking…up Scafell Pike, Snowdon and Machu Picchu by Heather Othick. . . . . . . . . . . . . . . . . . 24 n Help and hope for paediatric brain tumour patients: a French charity supports seriously ill children by Anita Granero. . . . . . . . . . . . . . . . . . . 26 n Advocating for brain tumour patients in Canada by Megan Winkler. . . . . . . . . . . . . . . . . . 28 n We can work it out: ways to ensure that patient care and support match advances in treatment by Ingela Oberg . . . . . . . . . . . . . . . . . . . 30 n The journey inwards by Diya and Nitesh Mohanty. . . . . . . . . 32 n International Outreach from the Society for Neuro-Oncology by Dr Gelareh Zadeh and Chas Haynes. . . 33 n SPECTAbrain - EORTC’s screening platform for patients with neurological cancers by John Bean . . . . . . . . . . . . . . . . . . . . . 35 n The Society for NeuroOncology Latin America (SNOLA) by Dr Marcos V C Maldaun. . . . . . . . . . . 37

n A family affair (The Sontag Foundation and The Brain Tumor Network) . . . . . . . 38 n The James Lind Alliance Neuro-Oncology Priority Setting Partnership - putting brain and spinal cord tumours at the top of the clinical research agenda by Laura MacDonald. . . . . . . . . . . . . . . . 41 n There is hope - there is always hope… by Bruce Blount . . . . . . . . . . . . . . . . . . . 44 n Out of Africa the SIOP 2015 conference By Alan Davidson, Anthony Figaji and Jeannette Parkes. . . . . . . . . . . . . . . 46 n Helping build a strong new generation of cancer specialists and researchers in Europe by Dr Matthias Preusser. . . . . . . . . . . . . 48 n Blogging about my brain tumour gives me the opportunity to raise awareness by Dawn Hamill . . . . . . . . . . . . . . . . . . . 50 n I won’t give up - the power of positive thinking helped one teenager cope with a rare brain tumour by Jordan Cowen . . . . . . . . . . . . . . . . . . 52 n Measuring health related quality of life (HRQOL) by Professor Dr Nikolay Gabrovsky. . . . . 56 n I’ve beaten a brain tumour twice in 13 years by Yalcin Tanrikulu . . . . . . . . . . . . . . . . . 58 n An interview with Sally Davis new CEO at the National Brain Tumor Society. . . . . . . . . . . . . . . . . . . . . 60 n The IBTA’s supporting organisations . . . 62 n Look to the Stars (The Pediatric Brain Tumor Foundation). . . . . . . . . . . . 64 n The third annual Brain Tumor Awareness Day in Argentina by Dr Alejandra T Rabadán. . . . . . . . . . . 65 n Central nervous system tumours in children and young people - an overview and invitation to ISPNO 2016 by Professor Barry Pizer. . . . . . . . . . . . . 66 n New study identifies first gene associated with familial glioma by Melissa Bondy. . . . . . . . . . . . . . . . . . 68 n My war against glioblastoma by Laura D’Avanzo. . . . . . . . . . . . . . . . . 70

n Trials and tribulations by Dr Rhoda Molife. . . . . . . . . . . . . . . . . 72 n Changing attitudes - an interview with Professor Dr Christine Marosi. . . . . 74 n Demystifying palliative care by Kathy Oliver. . . . . . . . . . . . . . . . . . . . 76 n International Brain Tumour Awareness Week activities in Bucaramanga by Dr Gabriel Vargas. . . . . . . . . . . . . . . . 79 n The long road to beating brain tumors an interview with Dr Eric T Wong. . . . . . 80 n Connecting brain tumour patients with advanced treatments and clinical trials by Dellann Elliott Mydland. . . . . . . . . . . 84 n The 2015 Asian Society for Neuro-Oncology (ASNO) conference in Manila. . . . . . . . . . . . . . . . . . . . . . . . . 87 n Words to live by – an interview with a 28-year brain tumor survivor and his caregiver by Jean Arzbaecher. . . . . . . . . . . . . . . . . 88 n Unmasking the secrets of cancer cell growth: what’s next in the investigation of glioblastoma? by Dr Sara Piccirillo. . . . . . . . . . . . . . . . . 90 n Nurse helps to make things better a new Croatian brain tumour group by Dr Krešimir Loncar. . . . . . . . . . . . . . . 92 n Lest we forget by Matthew Pitt. . . . . . . . . . . . . . . . . . . 94 n Every one a winner! by Dr Nehal R Khanna and Dr Rakesh Jalali. . . . . . . . . . . . . . . . . . . . 96 n Singapore’s first brain tumour awareness day by Eleanor Slade. . . . . . . . . . . . . . . . . . . 98 n Taking control of your health through physical activity and exercise by Chris Amidei. . . . . . . . . . . . . . . . . . . 100 n Adolescents and young adults (AYA) with cancer – a unique group of patients by Laura Mitchell . . . . . . . . . . . . . . . . . 102 n The brains behind a Twitter success by Catherine Blotner and Liz Salmi. . . 104 n Brain tumour patient and carer organisations around the world. . . . . . 107 n Other Organisations and Sources of Information. . . . . . . . . . . . . . . . 114

Magazine and cover design by Edwina Kelly, email: edwina@edwinakellydesign.co.uk Brain Tumour

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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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LETTER FROM THE EDITOR

Published by The International Brain Tumour Alliance (IBTA) Editorial Kathy Oliver, Phyllis Hughes (Editors) Chris Tse, Jeanne Pasmantier (Editorial Assistants) Magazine Design Edwina Kelly Design (edwina@edwinakellydesign.co.uk) Cover artwork Edwina Kelly Design (edwina@edwinakellydesign.co.uk) Copy With warm thanks to all our contributors, interviewees and colleagues in the international brain tumour community Printing Southernprint, Poole, Dorset, 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) PO Box 244, Tadworth, Surrey, KT20 5WQ, United Kingdom © 2015 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 the 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

Dear Reader, IT’S the IBTA’s tenth anniversary and so a good time for reflection. It hardly seems possible that ten years have passed since our organisation was established in May 2005 at the World Federation of Neuro-Oncology (WFNO) conference in Edinburgh, Scotland. It has certainly been a decade of some exciting new developments in treating brain tumours. We have also seen a greater focus of attention on quality of life issues and supportive care. Cancer patient advocacy has also “grown up” over the last ten years. For example, in some countries, we now see patient advocates much more actively involved in the design of clinical trials, as well as inputting into regulatory and reimbursement aspects. Many cancer patient advocates now serve on a range of important multistakeholder, international initiatives. But there is still a long way to go. Research into paediatric and adult brain tumours is woefully underfunded and a cure remains elusive. There is still much advocacy work to do in our developed nations and a huge amount required in those countries where brain tumour patients are living in abject poverty and with even greater unmet medical need. As we face the next decade together, please join us in our work to turn our world into one without the fear of brain tumours. Best wishes,

Kathy Oliver

Chair, International Brain Tumour Alliance (IBTA)

PS. A warm thank you to the many patients, carers, healthcare professionals and others around the world who have contributed their stories to Brain Tumour magazine. Thanks also to the IBTA’s advisors and volunteers who so generously help us serve the international brain tumour community. Articles in Brain Tumour magazine may be reproduced for the benefit of patients and carers as long as appropriate credit is given to the International Brain Tumour Alliance (IBTA) and originating authors. Please contact chair@theibta.org for permission. For extra single and bulk copies of Brain Tumour magazine and enquiries about postage and freight costs please contact chair@theibta.org. Digital copies of the magazine can be viewed online at www.issuu.com. Search for “IBTA”.

Many thanks to our sponsors for their support of the IBTA’s work

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.

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Meet the IBTA team

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Kathy Oliver is the IBTA’s founding Co-Director and its Chair. She is based in Tadworth, Surrey, UK.

Gordon Oliver is a Co-Director of the IBTA and lives in Tadworth, Surrey, UK.

Chris Tse is an IBTA Senior Advisor. He lives in Wellington, New Zealand.

Sally Payne is an IBTA Senior Advisor based in Sydney, Australia.

Fraser Legge is the IBTA’s financial administrator and is based in Edinburgh, UK.

Jenny Baker is an IBTA Senior Advisor and lives in Amersham, UK.

Maryanne Roach, who lives in the UK, is an IBTA Senior Advisor, Science and Technology.

Kiki Connor also from the UK, is the IBTA’s Events and Activities Coordinator.

Stu Farrimond is the IBTA’s Digital Technology Advisor. He lives in Trowbridge, Wiltshire, UK.

Edwina Kelly is a freelance graphic designer based in London, UK.

Jeanne Pasmantier is an IBTA Senior Editor and lives in New Jersey, USA.

Jean Arzbaecher, RN, APN, is an IBTA Senior Advisor and lives in Chicago, USA.

Mary Ellen Maher, RN, MSN, APN, CNRN, is an IBTA Senior Advisor and lives in Chicago, USA.

Carol Knight lives in the UK and provides administrative support for some of the IBTA's projects..

Phyllis Hughes is an IBTA Senior Editor and lives in Kingswood, Surrey, UK.

Rosie Cashman, MA, MSc(A), NP(A), is an IBTA Special Advisor. She lives in Vancouver, Canada.

Maureen Daniels, BScN, RN, is an IBTA Special Advisor and lives in Toronto, Canada.

Carol Kruchko is an IBTA Special Advisor and lives near Chicago, USA.

Sharon Lamb is an IBTA Special Advisor and lives in San Francisco, USA.

Mary Lovely, PhD, RN, CNRN, is an IBTA Special Advisor and lives in California, USA.

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INTERNATIONAL BRAIN TUMOUR ALLIANCE

Our vision, mission, purpose, values and principles

Our vision A world free from the fear of brain tumours

Our mission To advocate for the best treatments, information, support and quality of life for brain tumour patients, offering them, their families and carers hope - wherever they live in the world.

Our purpose Through facilitating collaboration within the global brain tumour community, we provide a strong and collective voice for brain tumour patient organisations across the world.

Values and principles The IBTA’s work is underpinned by the values of solidarity n equality n honesty n integrity n openness n transparency n hope n

Brain tumour patients, their families and carers are our top priority. We celebrate their courage and achievements, share knowledge and experiences, and work together for progress. We are committed to strengthening the evidence base for patient-centred treatment and care, in particular through the telling of and promoting of peoples' experiences and perspectives. We encourage, support and closely collaborate with established brain tumour patient organisations; we do not replace or supersede them. n Brain Tumour

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2014 - The IBTA year in review THE International Brain Tumour Alliance (IBTA) is a global network founded in 2005 as a dynamic worldwide community for brain tumour patient organisations and others involved in the field of neuro oncology. We bring together experience and expertise from all over the world with the

aim of enhancing the well-being and quality of life of brain tumour patients and their families. 2014 was a particularly busy year for us as, across the globe, we worked with Alliance supporters, prospective supporters, researchers, medical professionals,

pharmaceutical and device companies, government agencies, regulators, medical societies, key opinion leaders, the media and others to strive towards our vision of a world free from the fear of brain tumours. Here is a review of the IBTA Year in 2014.

SERVING THE INTERNATIONAL BRAIN TUMOUR PATIENT AND CARER COMMUNITY AT SCIENTIFIC CONFERENCES, MEETINGS AND HIGH-LEVEL INITIATIVES In 2014, the IBTA either exhibited at, participated in and/or provided a plenary or breakaway session speaker at a significant number of important brain tumour and cancer scientific conferences and meetings such as: n American Society of Clinical Oncology (ASCO) n Society for Neuro-Oncology (SNO) n British Neuro-Oncology Society (BNOS) n European Association of Neuro-Oncology (EANO) n Asian Society of Neuro-Oncology (ASNO) n Britain Against Cancer (BAC) n European Organisation for Research and Treatment of Cancer (EORTC) n European Society of Medical Oncology (ESMO) n European Society of Pathology (ESP) n European Brain Council (EBC) To date - over the ten years of the IBTA’s existence - we have delivered

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more than 50 plenary and breakaway presentations describing the brain tumour and cancer patient/carer perspective at numerous scientific conferences as well as providing articles for publication in a number of journals and magazines. In 2014, we also participated in a wide range of high level international initiatives regarding brain tumour and rare cancer patient advocacy issues. These initiatives include: n The European CanCer Organisation (ECCO) Patient Advisory Committee (PAC) n Rare Cancers Europe (RCE) n Council of the British Neuro-Oncology Society (BNOS) n European Patients Academy on Therapeutic Innovation (EUPATI) n European Society of Medical Oncology (ESMO) Patient Advocates Working Group (PAWG) n James Lind Alliance Neuro-Oncology

Priority Setting Partnership (JLA N-O PSP) In 2014, the IBTA visited ten countries and 19 cities in the course of its advocacy and awareness-raising activities.

OUR IMPACT This sustained level of determined advocacy and awareness-raising activity provided networking and communication opportunities with thousands of stakeholders in the international cancer arena and significantly increased exposure of the challenges of brain tumours from the patient and caregiver perspective. Participating in such a wide range of initiatives and conferences gave a voice in these arenas to brain tumour patients and carers which would not exist had the IBTA not engaged in this work.


EUROPEAN COMMISSION EXPERT GROUP ON CANCER CONTROL IBTA Chair and Co-Director Kathy Oliver was appointed as alternate to fellow advocate Jan Geissler (from the chronic myeloid leukaemia/CML community) to represent Rare Diseases Europe (EURORDIS, of which the IBTA is a member) on the European Commission’s Expert Group on Cancer Control. The first meeting of the Expert Group was held in Milan in September 2014 and opened by EU Health Commissioner Tonio Borg, and Italian Minister of Health, Beatrice Lorenzin. The Expert Group, chaired by the Commission, brings together representatives from Member State national authorities as well as representatives from patient groups, scientific and medical associations specialising in cancer, organisations working on cancer prevention, and industry.

PRINTING AND DISTRIBUTING 12,000 COPIES OF BRAIN TUMOUR MAGAZINE World Edition 2014

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Above: A meeting of the European Commission Expert Group on Cancer Control with patient advocates (from left to right): Jan Geissler (CML Advocates Network representing EURORDIS), Kathy Oliver (IBTA, representing EURORDIS), Isabel Mortara Lechtman (European Network of Gynaecological Cancer Advocacy Groups).

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In 2014 the IBTA printed 12,000 copies of a 114-page edition of Brain Tumour magazine and distributed them for free to contacts in 109 countries. Brain Tumour magazine was also provided free to thousands of delegates at various major national and international brain tumour and cancer conferences in numerous countries around the world.

Based on feedback we receive from readers, Brain Tumour magazine is highly valued by all stakeholder groups. In 2014, we published 12,000 copies of the fifth annual edition of the magazine. The bulk of these were sent for free to recipients in 109 countries. The remainder were given out at major brain tumour and cancer conferences around the world. The IBTA magazine helps unite the brain tumour community, bringing together stories of endurance and hope, scientific discoveries and noteworthy events, patient and caregiver perspectives – all in one lively publication. The magazine publicises the many issues involved in living with this disease and highlights the challenges facing all of the people on this journey. Readership of the magazine is extremely diverse, comprising brain tumour patients, carers, medical and allied healthcare professionals, representatives of the pharmaceutical industry, regulators, key opinion leaders, politicians, members of

Together with the other members of the Expert Group, Kathy and Jan will assist with drawing up legal instruments, policy documents, guidelines and recommendations on cancer control, at the request of the Commission. The Expert Group will also, upon request, help prepare guidelines on cancer data including epidemiology, cancer screening, quality assurance and information on cancer prevention, clinical cancer research, as well as for cross-cutting themes related to cancer. Kathy and Jan – working at the very heart of European health policy decision-making – will be focussing on the challenges of rare cancers such as brain tumours and CML with the goal of improving treatment, support, information and outcomes.

professional societies, constituents in other disease specific patient organisations, etc. Brain Tumour magazine is unique and even reaches parts of the developing world where, we are told, it especially brings comfort, inspiration, knowledge and hope to readers who would otherwise have little or no access to brain tumour information and support. Here are some comments from our subscribers: n “I’ve been browsing IBTA’s annual magnum opus this weekend and as before have found this to be a comprehensive, informative and carefully balanced piece of work. Warmest congratulations…on such a brilliant, high impact publication.” (CEO of a brain tumour charity)

continued on next page...

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continued from previous page “Just wanted to congratulate you and the team on a great edition of the IBTA magazine, the articles are all really interesting and it's great to see so many people worldwide working on such an important disease.” n

IBTA e-NEWS OUR MONTHLY ONLINE NEWSLETTER

captures the essence of what the brain tumour field is about. As a scientist that is very inspiring and helps to keep us focussed on the kind of research that will ultimately help patients who are unfortunate to suffer these diseases.” (neuro-oncologist)

(physiotherapist treating brain tumour patients)

“It is an excellent newsletter and I look forward to receiving it each month.” (pharmaceutical company representative)

n

“It’s really worth reading and highly valuable.”

n

(assistant professor of neurosurgery)

“I enjoyed reading the many interviews of colleagues, patient and caregiver commentary, and discovering the large number of countries that have brain tumor programs and philanthropic efforts. It was a real eye opener for me; I had no idea programs existed in so many countries. You should be very proud of what you have accomplished.” (neuro-oncologist)

n

“Your magazine is a tremendous source of information and HOPE for me…thank you and the IBTA for being there for us brain tumour patients.”

We also produced twelve editions of the IBTA e-News in 2014 which were sent electronically each month to over 6,000 highly relevant contacts around the globe. Our e-News reports on the latest developments in the international brain tumour community and beyond, encompassing the same breadth of readers as for the IBTA magazine. In the second half of 2014 the IBTA e-News underwent a complete redesign and we engaged the services of a professional e-News editor to oversee the compilation and the distribution of the e-news.

n

(brain tumour cpatient)

“Thanks for compiling and distributing these newsletters and the recent “Brain Tumour” magazine. My daughter has an astrocytoma diagnosed last year, after collapsing at work. Your work empowers us through knowledge and reminds us that we are not alone. Thank you!”

n

(carer to a brain tumour patient)

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A survey of our entire e-News subscription database was undertaken in December 2014 to gauge reactions to the newstyle IBTA e-News. Feedback was overwhelmingly positive. The IBTA e-News links members of the international brain tumour community and features the latest treatment advances, conference information, human interest stories and IBTA news. Readers said:

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OUR IMPACT

“…this is one of my favourite reads – the blending of the patients and science is really important as it

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“I find it an invaluable service.” (brain tumour patient)

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“Your publication has more value to me because it is not limited to the USA updates.” (brain tumour patient)

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“Continue your good work. I am so happy the IBTA exists.” (carer/former carer)

n

“I love it. I find it the most positive, comprehensive brain tumour information. Thank you for focusing on the facts and not the ‘emotional/ dark side’ of brain tumours, there are plenty of other websites and avenues for people to do this.” (carer/former carer)

n

“Great source of information put together by very committed and knowledgeable people. Thank you! I appreciate having the IBTA e-News as I don’t know where else I would get this information with such detail… It gives us hope for the future with the promising results in research that are happening. My daughter is 29 years old with GBM…” (carer)

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THE FIRST WORLD SUMMIT OF BRAIN TUMOUR PATIENT ADVOCATES – PUBLICATION OF THE OFFICIAL REPORT

and “very relevant” by participants. Comments included the following: n “Great overview of the international community.” “We have a lot of [new] ideas to explore”

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“I felt humbled by both the vast knowledge available and the struggles of many. This summit has forged my resolve to do as much as I can for the advocacy of brain tumour patients.”

n

IN 2013, the IBTA organised the First World Summit of Brain Tumour Patient Advocates in San Francisco, California which brought together for the first time more than 60 participants from 20 countries. A report of this groundbreaking event was completed in 2014.

“All participants brought valuable information to the table.”

DURING 2014 we also attracted (non-financial) support from over 160 brain tumour and cancer-related organisations for the seventh edition of our two awareness-raising projects: the International Brain Tumour Awareness Week and the Walk Around the World for Brain Tumours

n

“So grateful for all the information.” “Hoping there will be more [Summits] in the future.”

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OUR IMPACT The Summit provided participants with the opportunity to share challenges and solutions and to discuss their passion for improving outcomes for brain tumour patients around the world. On returning to their home countries, Summit participants were able to introduce new concepts, new practices and new energy into their work as a result of what they learned at the meeting from fellow advocates. One advocate was so inspired by the Summit that she went back to her home country and established the only national brain tumour support organisation in her area. Another advocate was inspired to set plans in motion for organising a major project highlighting the importance of encouraging more doctors to specialise in neurosurgery in her home country where there is huge unmet need in terms of surgical treatment for brain tumours. The IBTA’s First World Summit of Brain Tumour Patient Advocates was consistently rated “very valuable”

INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK AND THE WALK AROUND THE WORLD FOR BRAIN TUMOURS

“Very useful.”

“We might be from different countries and continents. But what binds us and brings us together is our common quest to understand everything that we can about brain tumours and share our acquired knowledge with those less privileged. Thank you so much for inviting me to be a part of the Summit and welcoming me into the warm and hearty family of the IBTA. I hope to take back my learnings and the amazing work that people are engaged with across the world and see how we can modify and localise them for our patients/ survivors/caregivers and volunteers back home.”

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OUR IMPACT The Walk Around the World for Brain Tumours creates a sense of family and bonding within the international community of patients, carers and families. This sense of camaraderie and a common purpose transcends national boundaries and cultures and broadens individual circumstances so people feel part of a larger group rather than bearing the stresses and strains of their individual journeys alone. The International Brain Tumour Awareness Week fosters a similar sense of unity in the community. Countries in which there were no brain tumour awareness-raising activities prior to the existence of the IBTA now proudly organise sponsored and unsponsored walks, conferences, media releases, art shows and other activities as part of the “Walk” and “Week” events.

We walked around the world for brain tumours nearly 13 times! The 2014 Walk Around the World for Brain Tumours was supported by 38 organisations, arranging collectively 113 walks, amassing a grand total of 322,527 miles, equalling just under 13 times around the world at the equator - quite an achievement! Wouldn’t it be great if we can walk even further in 2015? To register your 2015 walk visit http://theibta.org/sign-up-for-an-event/

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SOCIAL MEDIA PRESENCE In 2014, and responding to current trends in digital communications, the IBTA stepped up its social media presence by establishing a new Facebook page (https://www.facebook.com/theIBTA ) and increasing its Twitter traffic (https:// twitter.com/theIBTA ). We regularly post messages on treatment advances, breaking brain tumour news and other subjects for the international brain tumour community on both sites and have established a sold online following.

OUR IMPACT The IBTA Facebook page is now an important forum for engaging with our supporters from around the world, keeping them informed of our activities, such as participation in meetings and conferences, and alerting them to breaking news about brain tumours. It has also become a highly effective channel for promoting our key awareness raising campaigns: “Walk Around The World for Brain Tumours” and “International Brain Tumour Awareness Week”. In the past year we increased Total Page Likes five fold. Key metrics such as Post Reach and People Engaged have tracked higher throughout the year, with a major spike in activity experienced during the International Brain Tumour Awareness Week campaign. Our Twitter account @theIBTA continues to experience high growth, with the number of Followers increasing by 51% year on year to now exceed 1,240. We are also seeing consistent engagement with Twitter users (measured by number of retweets, mentions and favourites). Weekly Total Views often exceeded 1,500 with a high of 3,404 attained during International Brain Tumour Awareness Week. We are regular contributors to brain tumour related Twitter events, such as #BTSM (brain tumour social media) and #BrainTumorThursday.

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THE International Brain Tumour Alliance is primarily a voluntary organisation with no current employees. We commission outside, paid-for services where necessary. The IBTA’s international secretariat is based in the UK and an active and highly motivated community of advisors in Europe, Australia, New Zealand, the USA, Canada and the UK provide additional support. Pro bono legal, editorial and accountancy services are provided by expert professionals. Other IBTA volunteers and supporters are dispersed across the world. We are grateful to them all for the tremendous and determined work they do. The IBTA is a not-for-profit, limited liability company. Its objects, lodged with Companies House in London, UK (and listed on its website at www.theibta.org) are to achieve for brain tumour patients, their families and their carers a wider public recognition of the specific challenges which they face in dealing with their disease. n

About our work ACROSS the globe, the IBTA works with Alliance supporters, patient organisations, researchers, medical professionals, pharmaceutical and device companies, government agencies, regulators, medical societies, key opinion leaders, the media and others involved in the neuro oncology community to:

encourage the establishment of brain tumour patient groups in countries where they don’t yet exist

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promote collaboration on programmes and projects to benefit the brain tumour community

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advance worldwide awareness of this disease by developing and promoting activities highlighting the challenges and needs of patients and carers

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n disseminate knowledge, information and best practice to help shape health and research policies at national and international levels n celebrate the courage and achievements of brain tumour patients and carers

Real change and improvement in health and support service design and delivery comes through involving people directly affected by brain tumours. Our aim is to bring together the international brain tumour community as a strong global voice urging governments, regulators and the research and medical communities to better understand the concerns and perspectives of people living with this devastating disease. We place patients, their families and carers at the heart of all we do celebrating their courage and achievements, sharing knowledge and experiences and working together for progress. By working together we identify collaborative actions across the international community and work towards our vision of a world free from the fear of brain tumours. n


The World Federation of Neuro-Oncology Societies (WFNOS) Professor Michael Weller President, European Association of Neuro-Oncology/EANO

Dr Manuel Mariano President, Asian Society for Neuro-Oncology/ASNO

Dr David Reardon President, Society for Neuro-Oncology/SNO

One of the major tasks of WFNOS is the organization of the quadrennial World Federation of Neuro-Oncology (WFNO) meeting. It is anticipated that representatives from Charter Member and General Member states will play an active role in the development and promotion of this meeting in the future. The next WFNO meeting will be hosted by EANO and is scheduled for 3 - 7 May 2017 in Zurich, Switzerland. The administrative office of the Federation is located within the SNO office in the United States. n THE World Federation of Neuro-Oncology Societies (WFNOS) was formally founded in 2012 to codify the long standing cooperation between the European Association of Neuro-Oncology (EANO), the Society for Neuro-Oncology (SNO) in the US, and partner societies in the Asia Pacific region which are beginning to unite under the umbrella of the Asian Society for Neuro-Oncology (ASNO). The mission of WFNOS is to provide an international platform for education and research in the field of neuro-oncology through inter-organizational collaboration. Its purpose is to promote the development of the neuro-oncology field by elevating and sustaining the education of all healthcare professionals involved in neuro-oncology, and by encouraging mutual fellowship, goodwill, and scientific collaboration among physicians and scientists actively involved in the field of neuro-oncology worldwide. Additional purposes of the WFNOS

global effort are to ultimately improve patients’ outcomes through enhanced worldwide collaboration, and better educate medical professionals at all levels, with a strong focus on emerging countries so as to reduce inequalities in access to diagnosis, treatment and overall care of brain tumor patients across the world. ASNO, EANO and SNO are the Charter Members of WFNOS. Furthermore, WFNOS is open to any national neuro-oncology society, or confederation of neuro-oncology societies, that provides services to registered members with advanced educational degrees, consisting of M.D., D.O., Ph.D., or an internationally recognized equivalent. These members of WFNOS are referred to as “General Members”. As of March 2015, the national neurooncology societies of Austria, China, Germany, India, Italy, Japan, Netherlands, Spain, Switzerland, Turkey and the United Kingdom are official Member Societies of WFNOS.

To view the WFNOS Charter and to download the Member State Application form, please visit the WFNOS website which is hosted by EANO at www.eano.eu/soc_wfnos.php

The IBTA maintains a list of key online clinical trial portals to help patients and carers locate clinical trial centres and understand criteria for joining a brain tumour trial. For more information, visit www.theibta.org

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When the doctor becomes a brain tumour patient Dr Stuart Farrimond, brain tumour survivor UK THEY say you never forget the moment you are told you have cancer. For me, I learned of my brain tumour diagnosis in a rather unorthodox way. I was working as a hospital doctor and had undergone a ‘routine’ MRI scan to investigate a hormone imbalance. Stealing a few minutes away from an otherwise unremarkable day of ward duties, I used a hospital computer to look up my results. Immediately, I knew something was wrong: a white, fluffy-looking blob sat where smooth grey curves should have been in my right frontal lobe. My medical training told me that this was a glioma and that such a finding meant surgery, oncology appointments and an uncertain future. So even

before seeing a consultant, I knew what was in store - it is this kind of knowledge that makes being a patient and a doctor something of a mixed blessing. No amount of training, however, can prepare you for coping with the reality that you are that patient. That was eight years ago and after two successful operations I have enjoyed five

years with no further growth. Living in the knowledge that the mass could return at any moment is nevertheless frightening and confusing. As other brain tumour patients will testify, seeking to make good out of a bad situation can give comfort and purpose in these times. For me, this has meant being involved in charity work, brain tumour awareness events and - importantly - more time spent with loved ones.

Sitting on both sides of the consulting table Only after these experiences can I fully appreciate that healthcare professionals and patients often have very different agendas. Once upon a time, I would have considered the emotional aspects of any condition to be of trifling importance compared to the medical realities. Having sat on both sides of the consulting table, I no longer feel that way. This dual-person perspective has proved powerful in my efforts to help others. The ‘doc with a brain tumour’ story is readily

Stuart Farrimond and his wife Grace, enjoying time away together in Padstow, Cornwall, UK


seized upon by the media, and can offer incredible opportunities to publicise worthwhile causes and brain tumour charities. Understanding medical and scientific jargon has allowed me to write patient information leaflets and magazine articles using language that is meaningful for all. Stradling the patient-physician divide is something of a privilege and has even led to me lobbying in the UK Houses of Parliament for increased brain tumour research funding. Such meaningful activities can nevertheless take their toll. Fellow brain tumour patients will know only too well that a lifetime of MRI scans (sixmonthly for me) can feel like a storm cloud overhead. Involvement in public engagement work can act as a painful reminder of the looming tempest.

The future, unfiltered So when I was given the opportunity to assist with the IBTA’s monthly e-News last year, I had reservations. A role that involved curating, writing and distributing a monthly e-newsletter would combine my passions for writing, health communication, and supporting a worthwhile cause. But it would come at the cost of always being up-to-date with

the latest brain tumour-related news – good and bad. And sure enough, after coming on board, I quickly discovered that scrutinising research about my own condition is a very real source of anxiety. Over time, though, it has also become a reason for much hope. For alongside dismal outcome statistics are exciting new breakthroughs and promising new treatments. Every week, my inbox lights up with personal stories of inspiration that have emerged from terrible misfortune. Conferences and meetings completely previously unknown to me regularly take place in the four corners of the world, each serving to push forward brain tumour care. And out of the ashes of a history of underfunding come exciting developments in immunotherapy, nanotechnology and surgical treatments. Helping to bring together the IBTA monthly e-News has afforded me a window into the future for brain tumour patients, their carers and physicians – and a view that is unspoilt by media sensationalism. I now have a good idea of what is on the horizon. And whether or not you are interested in the latest research, or choose to read the e-News, you really should know that life in the future looks a lot better than how it is now. n

Above: Yuko Moue (front row, second from the right), Representative of the Pediatric Brain Tumor Network (PBTN) in Japan wrote to let us know that in April this year, she and a group of 42 pediatric brain tumor patients and carers joined the Gold Ribbon Walk Japan which took place in Tokyo’s Hibiya Park and Marunouchi Area to raise awareness of childhood cancer. Their walked mileage was donated to the IBTA’s Walk Around the World for Brain Tumours and an IBTA World Walk poster was carried along the route by Yuko. n

After Stuart Farrimond’s brain tumour surgery in 2008, he developed epilepsy which forced him to leave medicine. Retraining as a teacher, he lectured in a further education college before founding a free, digital publication called Guru Magazine, a periodical aiming to make science accessible to a wide audience (see www. gurumagazine.org). You can also follow Guru on Twitter at @ GuruMag and find it on Facebook: www.facebook.com/GuruMag. The magazine won support from the Wellcome Trust in 2012. In addition to working with the IBTA as an e-News Editor and Digital Technology Advisor, Stuart is a health and science communicator and has had his writing published in New Scientist, The Independent newspaper and Washington Post. n

Plan your 2015 “Walk Around the World for Brain Tumours” now! For further information contact : chair@theibta.org

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An interview with Dr M Kelly Nicholas M Kelly Nicholas, MD, PhD, Service Director of Neuro-Oncology Department of Neurology and Rehabilitation, University of Illinois Brain Tumor Center, USA IBTA: Where did you spend your childhood? M Kelly Nicholas (MKN): I was born in Texas but my family moved a great deal because of my father’s business. In my early years I lived in Ohio, New Jersey, and Tennessee before moving to Switzerland. After that, it was back to the USA with stops in three more states before graduating high school. I’m glad you didn’t ask me where I’m from! IBTA: Did you come from a family environment that had a connection with medicine or research? MKN: Not at all. My father’s side is business-oriented. My maternal relatives are big in the creative arts. IBTA: What attracted you to medicine and later to the brain tumor area?

“I came to understand that the range and

depth of a patient’s

explorations into the mysteries of their

disease is equal to or greater than that of

the experts. They are a different breed of experts.”

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MKN: The clinical picture varies widely for patients with both primary and metastatic brain tumors. We have the same tools for their treatment: surgery, radiotherapy, and medical therapies. However, for those with metastatic disease, we must consider the effects of the cancer on the entire body. Treatment of systemic disease and the tumor burden itself have to be considered. Having said that, I have met patients with brain metastases who function well and tolerate treatments better than some with primary tumors. It’s a complicated equation and one size definitely does not fit all. Above: Dr M Kelly Nicholas

MKN: Medicine stimulates me at many levels. I love the intellectual challenge but am equally appreciative of the deep interpersonal communication involved. I discovered the brain tumor world as a neurology resident. I was attracted to many challenges - scientific and psycho-social. IBTA: You have a particular interest in brain metastases. Briefly, what do you think are the three main challenges of delivering optimal care to patients with brain metastases? MKN: Brain metastases are much more common than primary brain tumors. As people live longer with cancer, the incidence will continue to increase. I think the biggest challenge here is in learning how to prevent metastases from happening in the first place. Once present, the challenge is to identify medical therapies that are both safe for the normal brain and effective against the tumors. IBTA: Do brain metastases create similar problems to treating patients with primary brain tumors?

IBTA: You also train medical students. What do you think is the most important thing for medical students to remember when breaking a diagnosis of a brain tumor to a new patient (or indeed breaking any bad news to a patient)? MKN: Medical students should learn to “break bad news” by observing others first. There’s a popular saying in

“In our zealousness to cure, we cannot

overlook the reality

of the situation faced by each patient as

they navigate their experience with the disease.”


medical school: "see one, do one, teach one”. This applies to neither surgery nor the giving of bad news. Many mature physicians remain uneasy when discussing serious diagnoses and their implications. Students and teachers alike should explore the reasons behind this. Fortunately, many medical schools now make it a part of their curriculum.

IBTA: How do you cope with the emotional and psychological challenges to you personally arising from your work? MKN: I try to stay in touch with my feelings. I am not reserved in this area; I may have a good cry once in a while. But mostly my experiences awaken in me the realization of human capacity: not just for suffering but also for joy and

Listening to patients… I am both a better doctor and a better person for the experience Dr Kelly Nicholas engages actively with brain tumour support groups as part of his work. Here he describes what inspires him about this kind of involvement in the brain tumour patient and caregiver community. A brain tumor diagnosis presents challenges for all involved, doctors included. The complexities of the disease itself along with the existential questions that arise, open a wide field for exploration. Would I wish a brain tumor on anyone? Of course not. Do I wish they didn’t exist? Of course. But exist they do, and they affect patients and those around them in ways that are as pressing as they may be frightening. Neuro-oncologists have made real but modest progress in extending patients’ lives in the past few decades. While the ultimate goal is to cure, we must be both mindful of the costs at all levels and patient with what often feels like forever. In our zealousness to cure, we cannot overlook the reality of the situation faced by each patient as they navigate their experience with the disease. Here, the doctor has much to learn from the patient and their loved ones. Here the doctor should be a skilled listener and eager student. Defined roles predicated on social forces beyond our control and often,

our understanding, may render us blind to opportunities for a deeper appreciation of what it means to live and die with a brain tumor. I was invited early in my career to participate in brain tumor patient groups. I learned quickly that there was a parallel world full of unanswered questions and concerns, beyond the reach of an invited medical expert. A bigger agenda, if you will. One difficult to articulate, but rich with yearning. I came to understand that the range and depth of a patient’s explorations into the mysteries of their disease is equal to or greater than that of the experts. They are a different breed of experts. I also learned that there is comfort in the safe haven of community; a place where we might explore things left otherwise unexamined. Out of these shared experiences comes deep understanding of our human condition. Along with a hearty dose of humor! While I will never stop trying to understand the biology that drives brain cancer - in order to someday provide safer and more effective treatments - I will never stop listening to and enjoying the company of my patients. It is my privilege to stand among them and I am both a better doctor and a better person for the experience. n

personal growth. No one ever said it was supposed to be easy. IBTA: Do you anticipate any significant breakthroughs in brain tumour therapies in the next ten years? If so, in what area? MKN: There are so many talented people conducting brain tumor research. It’s a good thing because our technology is taking us deeper and deeper into the mysteries of both cancer biology and brain function. A major challenge is finding an effective treatment that doesn’t injure the normal brain. I am especially excited about the potential for immune therapies. However, a breakthrough could come from any direction. IBTA: How do you relax? Do you play music, go for walks, sail a boat? Do you have a hobby? MKN: The answer is yes to all the above. I do many things when not at work. I have been married for over 30 years and enjoy my family and many great friends. I live to eat (far more than I eat to live) and enjoy cooking. Art is my jealous mistress. I met my wife in art school and still maintain an active studio alongside her. n

THE 2015 Trends in Central Nervous System Malignancies conference took place in Istanbul in March. Pictured above right is Nihat Karaoglu (founder and President of Beyin Tumoru Destek Grubu, the Turkish brain tumour patient group), interviewing Professor Riccardo Soffietti, centre (Turin, Italy), after one of the sessions at the conference. Nihat’s wife, Merve, is the cameraperson (left). n

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Camp Jinka -

a safe haven and magical place for children and teenagers on the brain tumor journey How her own tragedy inspired Judy Zocchi, founder of Camp Jinka, to establish the unique, award-winning summer experience in the United States CAMP Jinka (located in New Jersey) is a free, summer day program for children and teenagers whose lives have been impacted by the diagnosis of a brain tumor. This unique, award-winning camp offers creative indoor and outdoor activities while encouraging expression and connection with other kids having a similar life experience. It is a place where campers are no longer the kid who has a parent with cancer, or the child who is a brain tumor patient. They are just young people who understand each other without having to explain. For children who are dealing with fear and stress on a daily basis, Camp Jinka is a beacon of light. This will be the fifth year for Camp Jinka. Judy Zocchi, the camp's founder, lost her husband David to brain cancer in 2005. She said: “It was hard for me as an adult to watch my husband deteriorate and slip away. I could not imagine how scary it would be for a child to watch their parent going through the same thing. That’s when Camp Jinka was born.” Zocchi adds: “These kids are so resilient and such an inspiration. It is a blessing to spend time with them.” Not only is the camp a safe haven for the children, but it provides a respite for the family. Often, the caregiver is stressed, or the patient is in treatment, and parents are trying to juggle everything, including their children. Fran Bogdon recalls the first summer her children came to camp when she was diagnosed with a primary brain tumor followed shortly by her mom’s diagnosis of a metastatic brain tumor. 18

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Above: Camp Jinka Founder Judy Zocchi

"Camp Jinka has blessed my family with the miracle of hope, happiness, and healing," Bogdon said. "My two children were devastated watching me recover from surgery as they sat stuck helplessly in the house wondering if I would ever be the same again. Then Camp Jinka offered my children happiness and healing as they expressed their emotions with other children affected by brain tumors and as they created art together." Camp Jinka does not have a formal therapy program. It operates on the “untherapy” philosophy. The camp creates situations where kids can connect. While they are engaged in an activity with another person, when the time is right, many of them talk about what is going on at home. Conversations happen in all types of situations such as in the car ride back and forth to camp or while collaborating on a project. A social worker is available on request should the family need support.

"It was wonderful to see my children come home from camp laughing and smiling as they excitedly told me about their daily adventures,” Fran Bogdon said. “Camp Jinka allowed them to be children again and offered me precious quality time to spend with my mom as she recovered from her surgery." The art that is created over the threeweek camp period culminates in a large exhibition and community celebration. Other activities include fossil hunting, photography, dance, karate, field trips and more. Special guests visit Camp Jinka frequently to share their talents for a day, leading special projects like silk screening, bridge building, cupcake decorating, gardening and video game production. Judy Zocchi said: “The camp fosters such a feeling of community and acceptance that campers return to Jinka year after year. Camp Jinka is magic! I have watched children over the last five years start as a camper and grow into a peer counselor. They just love coming back. We have created a teen retreat to accommodate them as they get older. As one teen put it: "It was such a good summer spending time with people who understood what I was going through. I felt better being at camp. I'm looking forward to Camp Jinka again next summer." Zocchi is in constant fundraising mode since Camp Jinka is offered to children free of charge. "We just keep growing and growing,” she said. “New kids coming in and the older kids not wanting to leave. It’s a beautiful thing. My dream is to one day expand Camp Jinka nationally or even better - internationally!” n


Above: Peggy Bergin (far right), CoDirector, works with Alicia painting a plank from the garden bridge collaboration.

Above: It takes both sun shine and rain to make a rainbow. Mikayla and Rac hael (first left, second left) who are peer counse lors with Tim Kelly, Camp Jinka’s artist in residence and Cheryl Questori (right), who lost her husban d to a brain tumor and volunteers regularly.

a k n i J Camp acon e b a t h g i l of

Above: Caitlyn, a bra in tumor survivor, shows off her puzzl e piece. Can you figure out what it sa ys?

with Chism (back) rector Jessie Di p m eir th Ca st e: lo Abov enter) who and Olivia (c ho is w ) ht rig r Kyle (far left) and Anna (fa er nc ca n ai mom to br survivor. a brain tumor

Above: Camp Jinka Art Exhi bition at the Middletown Arts Center, Ne w Jersey, USA

ivias! Big Jinka’s two Ol Above: Camp cancer n ai br r father to Olivia lost he Olivia e ttl Li n. ee as thirt when she w tw as o. when she w lost her mom er-to-peer courages pe Camp Jinka en p Jinka’s m Ca Many of connections. teenagers or pers are now original cam lping new ts and are he college studen ion. at tu st to their si campers adju

CAMP JInka is sponsored by the Jinka Foundation, The David S. Zocchi Brain Tumor Center at Monmouth Medical Center, Middletown Arts Center and Poricy Park (all in New Jersey, USA). The camp was named after the founder’s first children’s book Jinka Jinka Jelly Bean, which helps young children when a loved one passes. Jinka was the nickname of Zocchi’s cousin Jeanmarie, who died young and was the inspiration for the book. Camp Jinka runs each summer through the month of July and also facilitates mini-camps and family outings throughout the year to keep the children and families together. Middletown Arts Center is the home base for the camp and space is always available for a child in need. For more information about Camp Jinka, contact Jessie Chism at jchism@foundationsthatmatter.org

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Long-term survival in glioblastoma - a project of the Brain Tumor Funders` Collaborative Prof Dr Michael Weller and Dr Caroline Happold Zurich, Switzerland, for the EORTC 1419 study team GLIOBLASTOMAS represent almost 50% of malignant brain tumors in adults, and range among the most lethal cancer types. Approximately three in 100,000 people a year are diagnosed with a glioblastoma. These tumors mainly affect patients in later life, but can occur in younger adults and even children. Due to the aggressive nature of this tumor, which invades the brain by infiltration and destroys healthy brain tissue, glioblastomas lead to a significantly reduced life span with sometimes considerable loss of quality of life. Almost half of the patients die in the first year of diagnosis, despite the use of a broad therapeutical approach including brain surgery, radiotherapy and sometimes several courses of chemotherapy. Yet, a small percentage of up to 5% of all patients suffering from glioblastoma may survive for more than five years. These patients are referred to as long-term survivors. The reasons leading to this survival benefit in this heterogeneous patient group have not been fully identified so far. These patients are now the focus of a large international comprehensive study, assessing potential clinical and biological factors of this long-term survival that may contribute to improved survival in glioblastoma patients in general. Considering the rareness of glioblastoma long-term survivors, a multicenter approach, involving a large number of clinical centers collecting patient data, is required. To this end, the Brain Tumor Funders’ Collaborative (BTFC) is now funding a new research network with a generous grant of US $2,000,000. The BTFC is a strategic partnership of five private philanthropic and advocacy organisations in the US and Canada: the American Brain Tumor Association, Brain 20

Brain Tumour

Above: Prof Dr Michael Weller, Chairman, Department

Above: Dr Caroline Happold, Department of

of Neurology, University Hospital Zurich, Switzerland

Neurology, University Hospital Zurich, Switzerland

Tumour Foundation of Canada, Children’s Brain Tumor Foundation, James S. McDonnell Foundation, and the Sontag Foundation. The study consortium comprises 24 leading centers for neuro-oncology worldwide, including centers in the US, Australia and Europe. The study will be performed under the lead of the Brain Tumor Group of the European Organisation for Research and Treatment of Cancer (EORTC, a non-profit association which aims to conduct, develop and coordinate clinical and translational research for the treatment of brain tumors) and the Brain Tumor Center at the University Hospital Zurich. Over a period of two years, the

participating medical researchers will collect extensive clinical data from over 400 patients who survived their disease for more than five years. They will record additional information including patient histories and health-related data, and perform extensive neurocognitive assessments to allow for a better understanding of the implications of the disease as well as the therapies in affected patients. Tumor tissue and blood samples from these patients will be collected to study the genetic and immunologic features of glioblastomas. Moreover, an analysis of all neuroimaging studies available from the


Canada’s Spring Sprint Spectaculars! BRAIN Tumour Foundation of Canada kindly donated a whopping 20,180 kilometres from their annual Spring Sprints programme to the IBTA’s 2014 Walk Around the World for Brain Tumours. These events involved nearly 6,000 people and raised CAD $1.50 million for brain tumour patient programs and research. Thanks so much for everything you do, Brain Tumour Foundation of Canada, to support patients, families and research into this disease. n

Above: A schematic of the EORTC 1419 study

selected patient group will be performed, assessing tumor growth patterns and development by different imaging tools. All the acquired information will later be compared to the data set of a reference cohort of glioblastoma patients who have not become long-term survivors. The Central Swiss Ethics Committee has approved the study protocol, and within the next months, all patients identified so far for study enrollment in all participating centers will be registered at the EORTC. The collected clinical data will be inserted

in a large database for further comparative analysis. In parallel, all available tissue samples will be catalogued in a central biobank in Germany, and sorted for the planned molecular and genetic investigations. First results of these investigations are expected by the end of 2016. The knowledge gained from this study will allow for a better understanding of the disease, and should help develop better treatment strategies for all glioblastoma patients in the future. n

Above: Brain tumour survivors gather at the Brain Tumour Foundation of Canada’s 2014 Spring Sprint in Edmonton.

If you would like to donate to the IBTA… 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: kathy@theibta.org If they wish to, individuals can also make donations directly to us via the online facility on our website www.theibta.org but please do not neglect your local or national brain tumour support groups.

Above: A Brain Tumour Foundation of Canada awareness-raising walk under blue skies and sunshine in Ottawa, Ontario.

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Living with gliomatosis cerebri my six year journey Nilay Ayan, brain tumour survivor Istanbul, Turkey MY name is Nilay Ayan. I’m 39, married with two kids. I am a six year survivor of a large and aggressive brain tumour called gliomatosis cerebri, the size of two golf balls spread into both hemispheres. I learned about my diagnosis by pure coincidence. After I had more than ten days of menstrual bleeding I saw my gynaecologist. She did some blood tests and saw that I had a low thrombocyte count. She referred me to a research hospital to find out why my count was low. They did more blood tests. My doctor said to come back to her if I had more bleeding. It was a Sunday morning that I woke up with heavy bleeding. When I tried to get up, I was dizzy from the blood loss and fell, hitting my head and knocking myself unconscious. My husband called an ambulance. In the emergency room they treated the bleeding and checked my head. Doctors noted an irregularity on the scans. Seeing my gynaecologist later that day, she insisted I see a neurologist. The neurologist ordered an MRI. We went to the appointment with my sister. I still remember his reaction when he asked: “Where is the patient now?” He couldn’t believe that a patient with such a large tumour was sitting in front of him. He said I needed an operation immediately.

Two conflicting opinions Although I had just heard I had a huge brain tumour, we were laughing at his reaction as we left the doctor’s office. Throughout the whole process, laughing has helped me a lot. Three days later I had a biopsy. The pathology was diffuse astrocytoma grade II. The neurosurgeon told us he could remove a big portion of the tumour and surgery was the only option. We decided to see another specialist. 22

Brain Tumour

My tumour is very rare

Above: Nilay Ayan (right) with IBTA Chair Kathy Oliver (centre) and a friend, Sema (a fellow brain tumour fighter from Istanbul), at the ASNO conference in Istanbul in 2014

He said that surgery was not an option, but he could irradiate the tumour and everything would be fine. We needed a good treatment plan but we already had two conflicting opinions. Until that moment only a few family members knew the situation. My sister called my brother who then lived in France. He asked for my test results and reports. He had a scientific background, so could make more sense of the situation than us. He made arrangements for a second pathology analysis and this time the diagnosis was gliomatosis cerebri type 3. My brother read all the literature he could and neither surgery nor radiation therapy promised a good outcome. He was looking for a third opinion and came across Prof Dr Hugues Duffau one of the most eminent experts in neurosurgery. To my brother’s surprise Dr Duffau was living only a mile from him in Montpellier. His opinion was also negative on the surgery and suggested we pursue chemotherapy.

The disease is so rare that not much is known about therapies but surgery clearly would not be a solution. We decided my treatment should be local. My children had school, all my family lived near me. I did not want to be away from them when I needed them the most and when we needed to spend as much time together as we could. The prognosis was grim according to statistics I had no more than six months to live. Our search for a good local oncologist led us to Dr Kerim Kaban, who had worked in cancer research at MD Anderson (Texas) before. This was the kind of doctor who would evaluate the best options for such a rare condition. Our second pathology result showed there were a lot of oligodendroid cells in the tumour. Equipped with this knowledge our doctor wanted to try temozolomide which was known to be effective in these types of cancers. Dr Kaban consulted with his colleague, radiologist Dr Meric Sengoz, and they thought that radiation therapy

Above: Nilay’s 39th birthday celebrations with her sister Neriman


Above: Nilay, her husband Hakan and their two children, daughter Gizem (left) and son Ozan (right),

Above: Winter holidays - Nilay and

enjoying the snow at a ski resort

husband Hakan

with adjuvant temozolomide might be very beneficial for me. Unfortunately the insurance we had would not cover the costs as this was a non-standard treatment. In fact there were no treatments for this condition. Also the treatment was not cheap at a cost of ten times the standard wage in Turkey. We appealed on the insurance decision but until it was granted we had to pay everything ourselves. During the radiation therapy I felt very weak, and I could not care for my children as I wanted to. My biggest supporters

have been my mom, my father and my brother. They always knew what to do when I had problems.

My journey continues I have been on temozolomide for more than a year. I haven’t had much of the side effects which other patients sometimes do such as low blood counts. I lost some hair at the radiation site but it grew back after a few months. After six months we learned our appeal was accepted and that the insurance would pay for the treatment.

Above: The Turkish Brain Tumour Association had a display table at ASNO 2014 in Istanbul. Nilay is

I have seen that there are many good doctors but there are also some who are not so experienced about brain tumours. There are also all sorts of unscrupulous people out there who offer miraculous alternative therapies. I was very lucky that I had a brother who was able to help me to make the right decisions for me. I sometimes feel sad that I put a huge burden on his shoulders by offloading many complicated decisions to him. Thanks to the treatment the tumour has shrunk 85 per cent and is stable. I am living life as normal. My occasional headaches and numbness that I felt in my arms has disappeared. My suggestion to newly diagnosed patients is that they don’t isolate themselves from life. Have people around yourself who have positive energy. Do not despair and take inspiration from people who have beaten the disease. n

The IBTA maintains a list of neuro-oncology conferences on its website at www.theibta.org

pictured at the far left with her brother Nihat and Nihat’s wife, Merve (right).

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Keep on walking… up Scafell Pike, Snowdon and Machu Picchu "I’m raising much-needed funds for brain tumour research and donating my walking mileage to the IBTA’s Walk Around the World for Brain Tumours." Heather Othick, Founder & Chief Executive, Ellie’s Fund - Brain Tumour Trust Yorkshire, UK

IN 2007 our world was ripped apart when our 11 year-old daughter Ellie was diagnosed with a grade 4 glioblastoma and given just six months to live. But LIVE she did, raising £25,000 for charity during the three years and one day until her death on Valentine's Day 2010. Since then her legacy, Ellie’s Fund – Brain Tumour Trust, has raised over £200,000, most of which has been used for research into brain tumours, and some of which has gone to support children affected by a brain tumour. Forty-nine families have benefitted to date. Having spent the last 12 years looking after my own three poorly children and since 2010 sitting behind a computer organising and running Ellie's Fund - Brain Tumour Trust, I decided it was time to plan a challenge of my own for 2015.

I'm getting moving - I'm going walking! Last year I trekked Scafell Pike, the highest mountain in England at 3209 feet (978 metres), as well as Snowdon, the highest mountain in Wales at 3560 feet (1085 metres). Twenty-four of us will take on Scafell Pike again in May 2015. This is all training towards a Charity Challenge Trek up Machu Picchu in Peru, also in May 2015. Machu Picchu, at 7970 feet above sea level (2430 metres) is particularly going to be a tough personal challenge for me. I'll be travelling 6000 miles with a group of people that I don't know to take 24

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Above: Ellie (left) and mum Heather

part in the biggest thing that I have ever done. I'm nervous about it, but knowing how much brain tumour research and awareness will benefit from this also makes it exciting. I look forward to adding my miles, including the 30+ miles I’m doing per week in training at the moment, to the International Brain Tumour Alliance’s 2015 Walk Around the World for Brain Tumours. It's time for me to start living my life again - and what better way to do it than by raising awareness of the biggest cancer killer of people under 40 in the UK, while fundraising for the charity that I set up in my daughter’s name, and all the while pushing myself, both physically and emotionally. One month after I return from Peru,

about 30 of us will take on Snowdon together, also to raise brain tumour awareness. It took me about three months to go from thinking about taking on a challenge to actually finding the right challenge for me. But first I needed to make a difference to brain tumour patients worldwide by raising at least enough money for two thirds of a day's work at one of the brilliant brain tumour laboratories in Yorkshire. Every donation will support the researchers as they work so hard to find a cure for this dreadful disease. n For more information about Ellie’s Fund BTT, visit http://www.elliesfund.com


Twilight highlights from The Brain Tumour Charity’s walks in the UK IN 2014 The Brain Tumour Charity (UK) held The Twilight Walk in three locations: Warwick on 21 September, Chester on 28 September and Windsor on 12 October. Louise Taylor, Director of Fundraising and Communications said: “Between the three events we had 1,055 participants walking 10k, equating to a total of 10,550k (6,555 miles) walked and £213,000 raised.” The mileage from The Brain Tumour Charity Twilight Walks was “donated” to the IBTA’s Walk Around the World for Brain Tumours. Louise added: “In Warwick, the castle, the River Avon and St Nicholas Park provided an incredible backdrop to an unforgettable evening. In Chester, walkers took in the city's

Above: Twilight falls in Windsor, home of the Above: Walking the route in Chester, UK

famous castle

majestic cathedral as well as its Roman amphitheatre, suspension bridge and meadows, a stunning route at sunset. At our final walk in Windsor, walkers followed a magical route past Windsor Castle, the River Thames and the Long Walk.

The spirit, strength and passion of supporters at each 10k walk made our team feel so proud to be part of the brain tumour community and we were humbled and honoured to hear why everyone was inspired to take part. n

Novocure is proud to support the IBTA

www.novottftherapy.com

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Help and hope for paediatric brain tumour patients: a French charity supports seriously-ill children Anita Granero President, Association Oscar’s Angels, Toulouse, France OSCAR’S ANGELS is a non-profit charity that cares for and supports families, emotionally and financially, who have children hospitalized with brain and spinal tumours and severe neurological problems. Our mission comes from the personal experience of our founders whose lives were changed forever in 1995 by a tragic drowning accident involving their six year old nephew Oscar. Faced with such a crisis, and together with a friend, the founders created Oscar’s Angels. The aim of the organisation is to assist, via a social support network, all the families who go through such life-changing experiences, particularly involving long periods in hospital. This can be a painful time for both the children and their family. Above: Anita Granero’s organisation in Toulouse helps families who are facing a crisis with a seriously-ill

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Focussing on paediatric neuro-oncology

child affected by a brain or spinal cord tumour or other severe neurological conditions

Aware of all the difficulties people in this situation face, we provide care and financial support to families following a serious illness or an accident. We have a particular focus on paediatric neuro-oncology. We created the first Parent Advocate Program available in France in the Children’s Hospital of Toulouse. We work with the neurosurgery, neurology, haematology/ oncology and intensive care units. Each volunteer is trained to work in a hospital environment and is perfectly integrated in the medical teams. He/she assists the parents during the diagnostic and therapeutic process and shares with the medical teams all information necessary to care for the family in the best possible way.

Oscar’s Angels’ primary task is to offer on-going daily guidance and emotional support during a family’s hospital stay and all through their child’s illness, helping them understand complex medical information and giving financial assistance when necessary. We also help parents deal effectively with the family disruption and turmoil that can result in marital, sibling, and peer conflicts. Oscar’s Angels volunteers can help the family obtain the assistance they need from members of the psychosocial and paediatric team.

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Right: Anita hugs one of the patients she has supported at the children’s hospital in Toulouse, France.


Oscar’s Angels provides significant, essential support This exceptional, unique and innovative programme is recognized as essential because it brings to medical professionals a better understanding of the emotional stress faced by families when their children are in hospital. The programme also highlights to healthcare staff the needs of these families who are experiencing a particularly challenging and difficult time in coping with their child’s life-threatening illness. An Oscar’s Angels volunteer also works with the Paediatric Advanced Care Team (PACT) at the hospital to provide emotional support for families embarking on end of life care for their child. The association has been able to adapt and integrate within the hospital, as well as with families. Above: Oscar’s Angels President Anita Granero with young patient Joris whose family is very active in the charity

Expanding our horizons Internationally our aim is: n to promote advocate parent programs in children’s hospitals around the world n to help financially the families of hospitalized children n to develop a worldwide network of similar charities in order to improve and share our understanding of the families’ needs n to fund scientific research in paediatric neuro-oncology and n to bring awareness to paediatric palliative care.

With the support of the families and the medical community, Oscar's Angels is ready to promote its experience beyond France in order to encourage other charities or hospitals to start similar programs. n

For further information about Oscar’s Angels, visit their website at www.oscarsangels.com

Raise awareness of the challenges of brain tumours - plan an event for International Brain Tumour Awareness Week 2015 (25th to 31st October 2015) Above: Toulouse rugby player Thierry Dusautoir. Thierry is one of Oscar’s Angels’ Ambassadors.

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Advocating for brain tumour patients in Canada Megan Winkler, Director of Community Engagement Brain Tumour Foundation of Canada

EVERY month, 837 Canadians will hear the words, “you have a brain tumour.” And they will add their voice to the 55,000 survivors across this country who are aching for an increase in awareness and understanding about the disease that is changing their lives. In Canada, we are fighting for four key issues: four things that if changed, will make a measureable difference in the lives of patients and their families.

standardized system to gather brain tumour statistics simply can’t wait. When every person with a brain tumour in Canada is counted and accurate Canadian data about brain tumours is available, efforts to ensure equal access to drugs, treatments and services for all brain tumour patients will accelerate. We firmly believe that every brain tumour matters, regardless of stage or grade and therefore, they should count.

1 The first is equal access to the best evidence-based care for all Canadians living with a brain tumour. This includes the need to overcome both financial and bureaucratic challenges to accessing all aspects of treatment and rehabilitation required for survivors to retain and regain recovery and independence.

4 We know that other advocates around the world are fighting for these same things and we are pleased to stand and march together. Together we can achieve the linchpin all of these things require – and our fourth issue – critical awareness among influencers in government and other policy makers.

2 The second issue is an increased investment in research. The survival rate of malignant brain tumours isn’t keeping pace with other cancers; we must increase investment to stop this inequality. 3 The third issue is the need to count (3) every brain tumour. The need for a 28

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But there is hope. More patients and families are connecting every day and leaning on each other. Research is being funded across Canada and around the world to learn more about this complex disease that takes too many lives. And together, we are lifting the burden of a brain tumour. n

Head for the Cure headed straight for success! DAE Smith of Head for the Cure in the United States reported that their 5K in central Texas in March this year was a huge success. Dae said: “This was our third year in central Texas and it was a wonderful event at Camp Mabry! We had beautiful weather, but, more importantly, we had such amazing energy and excitement at our event from everyone rooting for a cure for brain tumours and cheering on those going through this battle. The community in Austin, Texas has been great at championing this cause, and this event further proved that! Our walkers donated a distance of 3150 kms to the Walk Around the World for Brain Tumours and altogether we raised an incredible $166,959! Dae also let us know that the Head for the Cure 5K event in midMissouri, USA also went very well: “While mid-Missouri is one of our smaller events, they still rally and bring on the energy and momentum! Unfortunately, they show that brain cancer can touch anyone anywhere, but they are fighters and rally around this cause. We had some great teams and were so excited by this year's turnout and fundraising! Go midMissouri! The total distance walked in this event was 750 kms which was donated to the IBTA’s Walk Around the World for Brain Tumours. $17,000 was raised. n

Above: One of the many teams who participated in the Head for the Cure central Texas event


The Walk by Faith, Kingwood, Texas, USA AMBER Bender, Founder and President of the Texas-based Addi’s Faith Foundation wrote excitedly to the IBTA to say: “Our awarenessraising walk in 2014 went very well, thank you! Would love to tell you more and “donate” our steps to the Walk Around the World for Brain Tumours!” Amber said: “The day was beautiful. Sunny and perfect…felt my angel Addi smiling down on us. Had a little over 2000 participants and raised $212,000! Everyone had a great time…great kids’ zone with five bouncy houses, snow cones, face painting, spin art…the list goes on! We also had lots of auction items and raffle baskets. Our 2014 Walk by Faith honoree

Abraham Argaza (a 13 year-old brain tumor survivor), along with his parents, were there to share their story and battle with brain cancer. Dr. Gopalakrishnan spoke a bit about the groundbreaking pediatric brain tumor research that we are funding at the MD Anderson Cancer Center here in Texas. By the way, also in 2014, we had our first ever Cut to Cure event when four girls (including myself) and one guy cut ten or more inches off their hair to be donated to Locks of Love. They also raised funds for Addi’s Faith Foundation. It was a win, win, win!" n Readers can find more information about Addi’s Faith Foundation at www.AddisFaithFoundation.org. They are also on Twitter (https://twitter.com/#!/AddiFaith) and Facebook (www.facebook.com/ addisfaithfoundation and www.facebook.com/walkbyfaith5k )

Above: Team Phil participated in the 2014 Walk by Faith. Walking mileage achieved during this event was donated to the IBTA’s Walk Around the World for Brain Tumours.

Above: The triumphant Hope for Hailey team also participated. Photos courtesy of Race Shots www.raceshots.net

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

www.celldex.com

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We can work it out: ways to ensure that patient care and support match the advances in treatment Ingela Oberg, Neuro-Oncology Specialist Nurse, Cambridge, United Kingdom

AS a neuro-oncology specialist nurse working at Addenbrooke’s Hospital in Cambridge and now lead nurse for the European Association of Neuro-Oncology (EANO), I often get asked how I cope with my job and what spurs me on. Some patients feel the empathy shown them is displaced as they often think ‘why me?’ and ‘you don’t know what it’s like’. But that’s where they are wrong. I know exactly what you are going through, and that’s what spurs me on.

Memories of my own brain tumour journey with my brother When I told my mother I had got the job as a neuro-oncology specialist nurse, she burst out crying. Not through pride or any overwhelming feeling of achievement on my behalf, but because it opened the flood gates of memories of my younger brother and his diagnosis of an anaplastic oligodendroglioma. On Armistice Day, November 11, 2014, we ‘celebrated’ 25 years since my brother’s death, yet the memories are still rife. They never leave you. Since my brother’s diagnosis in 1986, treatments for brain tumours have come a long way, but the end outcomes sadly remain the same. It’s time that changed.

Challenges we need to meet We need to ensure that as health care providers we don’t overlook the complex needs of the patient and their carers in pursuit of better surgical outcomes, or access to clinical trials and novel chemotherapy regimes. We need to continue to support our 30

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Above: Neuro oncology nurse Ingela Oberg works at Addenbrooke’s Hospital in Cambridge.

ever-complex and growing cohort of patients, as we get better at treating not only the primary disease, but also symptoms, side effects and recurrences. So, how are we to achieve this? In my opinion we need to focus on three aspects: long-term follow up and support; provision of information and access to specialist neuro-rehabilitation.

Long term follow up and support Let’s start with follow up. For those patients with a primary, malignant brain tumour regularly encountering the NHS in the UK, I can say they generally have access to a specialist nurse on a neardaily basis. They are given rafts of information, both written and verbal, and are supported in every way possible. But for those who have a low grade or

even benign brain tumour, the situation changes rapidly with care often being fragmented and uncoordinated. Some are monitored by nurses, others surgeons, neurologists, GPs or oncologists, and some are without follow up at all. It is quite often these patients who most need support. They are living with a ticking time bomb inside their heads, waiting for the fuse to ignite after several years, or those cured but left disabled by their brain tumour. Judging by the support groups and patient feedback we receive, these low grade/benign brain tumour patients are the area where we need to improve access to nursing support. I feel strongly that this should be streamlined with minimum set standards at a national level. Additionally the provision of information and signposting for this patient cohort is also hugely lacking, as shown in a recent survey conducted by The Brain Tumour Charity. At Addenbrooke’s we run a monthly support group for brain tumour patients, and it is always the benign cohorts that state their follow-up leaves a lot to be desired. Some of these patients are informed of their diagnosis over the phone or via a letter following their discharge; some only three months later when they have their first routine appointment following surgery. They have been given next to no written information relating to their tumour type nor any signposting to us as specialist nurses.

Provision of information In the UK we have access to some of the biggest and most involved charities in the world. Charities help us health care


professionals immensely in bridging gaps in service provisions, and I have never previously worked in a role where such a symbiotic relationship is demonstrated. We receive new patient packs from them and order high quality and vetted information leaflets free of charge. They offer one-to-one counselling and have 24 hour phone lines available for anyone affected. They also offer monetary grants. They undertake not only vital fundraising for research, but put on information and education days for patients, carers, and professionals. They are vital in our daily workings, yet there is still a lot that jointly we need to achieve. We need to look at obtaining realistic, achievable goals for our patients. In this day and age, it is wholly unacceptable for a young person recovering from a brain tumour to be placed in a nursing home full of elderly, demented patients simply because there is nowhere else for them to be placed. I cannot say adequately cared for, because a nursing home will not have the specific knowledge or skills required to rehabilitate

www.eano.eu

someone with neurological deficits such as speech, movement or memory.

Access to specialist neurorehabilitation My final point is about specialist rehabilitation. In the UK, we urgently require specialist brain tumour rehabilitation, with access to dedicated neuro-psychologists; occupational therapists; specialist physiotherapists and speech and language teams who have an understanding of brain tumours and who will help rehabilitate these patients. If this means going home with carers just once a day instead of four that is a realistic achievement. Statistics about the prevalence of brain tumours and their devastating effects on both patients and their carers are well documented. With improved outcomes we see the real need for improved patient care. We need to lobby commissioners to help our patients live their lives as fully and meaningfully as possible - or to help them

have a dignified end of life at home, rather than in an unsuitable environment such as a nursing home. We have a duty of care to our patients, as well as those caring for them, and we are currently failing them where long term follow-up, provision of information and specialist rehabilitation are concerned. Between us, let us raise these issues more determinedly to make a lasting change for the better. n

Plan your 2015 “Walk Around the World for Brain Tumours” now! For further information contact : chair@theibta.org

MANNHEIM/ HEIDELBERG

Congress Center Rosengarten Mannheim, Germany

Photo © heidelberg-images.com

EUROPEAN ASSOCIATION OF NEURO-ONCOLOGY

OCTOBER 13-16, 2016 12TH MEETING

See you there! Brain Tumour

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The Journey Inwards Diya and Nitesh Mohanty, brain tumour patient and caregiver Mumbai, India Nitesh writes: “My wife, Diya was diagnosed with a low grade glioma within the right parietal lobe of her brain in 2007. Since then she’s undergone three surgeries as well as a series of radiation and chemotherapy treatments at the Tata Memorial Hospital, Mumbai, India. I’ve been a friend, a husband and a partner to her through this journey. Each day life teaches us to be more gracious and humble with gratitude.” IN the beginning you remember it all with much clarity. The day she had her first seizure, the day she was operated on, the day she went into radiation, the day she started her chemotherapy, the day she had her relapse and so on... These days get imprinted on the calendar of your life. They become as important as birthdays and anniversaries. In other words these days become milestones, moments which turned your life upside down. One has a choice - to look at these days with self-pity, fear, stigma and sorrow or to look at these days when you were gifted another chance to reflect and introspect so you could measure life not with anger and animosity but with hope and reconciliation. According to Buddha, we are shaped by our thoughts; we become what we think. It took us some time before we realized that if we can let go of the rigidity and the resentment that we harbor within, we’ll be able to dispel negativity and create space for our own well-being. One of the greatest revelations on this journey has been acceptance - to be able to accept the fact that our minds are like vessels and it’s we who decide what they get filled with. What we think about ourselves and about life becomes true for us. The 32

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Above: Diya (left) and Nitesh (right) while on a vacation in Nainital in the foothills of the Himalayas.

universe totally supports us in every thought we choose to think and believe. When we create peace and harmony and balance in our minds we will find it in our lives. Whatever is happening “out there” is only a mirror of our own inner thinking. The only thing that we are ever dealing with is a thought and a thought can be changed. It was Diya’s diagnosis of a brain-tumor which propelled us to make the journey inwards and soon we realized that all the answers lie within us. It didn’t happen overnight. Instead as we moved from one day to another, we discovered books which helped us understand ourselves better, mystics who guided us from the darkness to light, music which brought in a certain kind of peace and calmness. From the meditative chants of Ani Choying Drolma, the mystic poetry of Kabir Khusrow, Rumi, the words of Louis Hay, Elif Shafaq and Mahmoud Darwish are some of the divine interventions that have made us more reflective of our inner self, our

thoughts and their manifestations. Making us hold each passing moment as a precious gift. Helping us take each day as it comes and living in the present without burdening ourselves with the anxieties about the uncertain tomorrow. n

The IBTA’s mission: to advocate for the best treatments, information, support and quality of life for brain tumour patients, offering them, their families and carers hope - wherever they live in the world.


International Outreach from the Society for Neuro-Oncology Dr Gelareh Zadeh, SNO International Outreach Chair Canada

and Chas Haynes, SNO Executive Director USA

THE 19th Annual Scientific Meeting and Education Day of the Society for NeuroOncology was held on November 13-16, 2014 in Miami, Florida. The meeting enjoyed record attendance for a standalone SNO meeting with close to 2000 registrants from 41 different countries in attendance. The meeting marked the occasion of the selection of the first SNO International Symposium Award designed to support a neuro-oncology educational course in the developing world. The winning application was submitted by Jafri Malin Abdullah of the University of Sains in Malaysia. Details of the 2015 award process will be posted on the SNO website in the coming months. The SNO International Symposium Award initiative is supported by Mark Bernstein, the Greg WilkinsBarrick Chair at the University Health Network, University of Toronto, with additional matching support from the SNO Foundation. As part of an ongoing effort to promote clinical and research activities in both pediatric and adult neurooncology worldwide, SNO provides travel scholarships for young investigators to attend its annual meeting. Travel scholarships are awarded through a competitive application process. SNO

Deepal Sanjeeva Gunasekera (Sri Lanka) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Mazda K. Turel (India) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Subhy Houissa (Tunisia) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Kaunda Ibebuike (Nigeria) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Wendy Cristhyna Gomez Garcia (Dominican Republic) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Daysi Chi-Ramirez (Cuba) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Mian Guo (China) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Vladyslav Buryk (Ukraine) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Berrada Narjiss (Morocco) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Lorena Baroni (Argentina) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

congratulates the 2014 winners listed on the left. To date, SNO has provided travel awards to young investigators from the following countries: Algeria, Argentina, Bosnia and Herzegovina, China, Columbia, Cuba, Dominican Republic, Egypt, Georgia, Guatemala, India, Indonesia, Kyrgyzstan, Mauritanie, Mongolia, Morocco, Namibia, Nepal, Nigeria, Pakistan, Panama, Philippines, Russia, Serbia, Sri Lanka, Sudan, Thailand, Tunisia, Ukraine, Venezuela and Yemen. SNO’s 20th Annual Scientific Meeting and Education Day will be held in San Antonio, Texas, on November 19-22, 2015. Details of the 2015 travel scholarships will be posted to the SNO website www.socneuro-oncology.org this summer. Last but not least, thanks to the generosity of SNO member Ali Choucair, SNO is exploring ways to make copies of our journals, Neuro-Oncology and NeuroOncology Practice, available at no cost to developing regions, with a focus on the Middle East. n

The 2015 International Brain Tumour Awareness Week is from 25th -31st October. Brain Tumour

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PHILIPPINE

BRAIN TUMOR ALLIANCE • Counselling with fellow neuro patients and family members. • Referral of patients to neuro medical specialist (neuro-oncologists, neurologists, neurosurgeons). • Educating fellow survivors and their families in nutrition and diet during chemotherapy, radiation and surgery. • Encouraged better availability of clinical trials for brain tumor patients in The Philippines. • Raising awareness of the challenges of brain tumours through public gatherings, through our provincial trip.

Board of Medical Advisers: Dr. Gerardo D. Legaspi, NeuroSurgeon (SLMC, TMC, UP-PGH) Dr. Gerardo H. Cornelio, Oncologist(SLMC, SJDD, UP-PGH) Dr. Santosh Kesari, NeuroOncologist/Neurologist, Moores Cancer Center (MCC), UCSD Mr. Marlon Saria, AOCNS Onco Nurse Specialist, MCC, UCSD Dr. Luis Martin Habana, Cardiologist (TMC, CGN, UP-PGH) William C. Abbott / Susan T. Abbott, Founding Director/ Co-Director EMAIL ADDRESS: wcabbott@gmail.com hca7sta@yahoo.com

WE ARE ON FACEBOOK: Philippine Brain Tumor Alliance and “LIKE” us!

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

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SPECTAbrain, EORTC’s screening platform for patients with neurological cancers, nears launch John Bean, Communications Office, European Organisation for Research and Treatment of Cancer (EORTC)

SPECTAbrain, a platform within the European Organisation for Research and Treatment of Cancer’s (EORTC) SPECTA (Screening Patients for Efficient Clinical Trial Access) will soon be launched for patients who have been diagnosed with neurological cancers. SPECTAbrain promises to simplify access for these patients to clinical trials that are geared towards their specific type of cancer. This platform will initially open in seven sites located in France, Italy, Switzerland, Germany and The Netherlands, and it is planned to open additional sites in other countries in the future. Patient participation in SPECTAbrain, however, can extend beyond these sites and locations, using translational research programs within clinical trials.

SPECTA improves clinical trial accrual As is the case for all SPECTA platforms, SPECTAbrain stands out in the clinical trial landscape in that a patient from any hospital can have their biological materials sent for central pathological analysis at the Erasmus MC Cancer Institute in Rotterdam, and still be treated according to best practice at their local hospital. Then, when a clinical trial becomes available for that patient, they can enter that trial through a participating institution. This improves clinical trial accrual efficiency and has the added benefit of providing smaller health care institutions and their patients with access to clinical research being performed elsewhere. There is already a platform up and running within SPECTA for patients with advanced stage colorectal cancer

(SPECTAcolor) and in addition to SPECTAbrain there are platforms being planned for patients with lung cancer (SPECTAlung) melanoma (SPECTAmel), rare cancers (SPECTArare) and prostate cancer (SPECTAprostate). Overall, EORTC’s SPECTA has emerged as a truly valuable as well as adaptable model for translational research in various tumor types. The successful start of SPECTAcolor demonstrated that the complex logistics and infrastructure needed to conduct next generation trials in a multinational setting were manageable. This particular platform is now open in 21 clinical centers located in nine countries in Europe and has recruited almost 600 patients since its launch in September 2013. Recent pathological reviews and core analyses of tumor blocks performed at SPECTAcolor’s central biobank at Dresden University Hospital deemed over 98% of these samples as adequate. It is essential to tailor treatment to the molecular characteristics of the patient and disease, and molecular characterization of a patient’s disease is now a prerequisite for access to many clinical trials. Even so, molecular characterization is beyond the scope of most hospitals. Cancer is too diverse. Also, setting up an international infrastructure to analyze human biological materials for each and every cancer clinical trial is formidable. SPECTA offers a viable European solution to this problem.

The SPECTA approach is well suited for brain tumors Primary brain tumors vary with respect to incidence across age groups, tissue characteristics, genetic profiles, response to treatment, and patient outcome. Gliomas, the most common primary malignant brain tumors, are sub-classified according

to tissue characteristics, and molecular markers classify these tumors even further: O6-methylguanine DNA methyltransferase (MGMT) promoter methylation in patients with glioblastoma, IDH1 mutations and 1p/19q co-deletions in patients with anaplastic oligodendroglial tumors. SPECTAbrain aims to identify and validate additional markers for patients with neurological cancers and, in this way, help doctors make appropriate treatment decisions for their patients. n For more information about SPECTAbrain, please contact: www.eortc.org/contact

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Be informed Read the monthly e-News distributed by the International Brain Tumour Alliance (IBTA) for information from within the international brain tumour community. Go to the IBTA website (www.theibta.org) and click on the subscription link.

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WWW.STOPBRAINTUMORS.ORG

THE DUTCH BRAIN TUMOR FOUNDATION

Raising awareness and money for brain tumor research

Hoofdstraat 88 | 3972 LC Driebergen | The Netherlands

GFME 14 years GFME, Glioblastoma Fundation Michele Esnault, established in 2001 is a French-based (Marseille), patientoriented, 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 650 patients, care givers, friends and family members around the globe. For more details gfme@free.fr

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The Society for NeuroOncology Latin America (SNOLA) Marcos V. C. Maldaun, MD, PhD, Foundation President of the Society for Neuro-Oncology, Latin America (SNOLA); Co-Coordinator of Neurology and Neurosurgery Center, and Co-Coordinator of Neuroncology Post Graduation Course Sírio Libanês, São Paulo, Brazil; Emeritus President of the Tumor Chapter of FLANC (Federación Latinoamericana de Sociedades de Neurocirugía)

WE all know how complex it is to treat a patient with a brain or spinal tumor. We have several considerations to apply from the clinical and imaging diagnosis until last recurrence. This involves a multidisciplinary approach with specialists in neuro-oncology including neuroradiologists, neurologists, pathologists, neurosurgeons, oncologists, radiotherapists and support teams. There are constant advances in imaging, surgical techniques, molecular and genomic applications, new medications and combinations of drugs, targeted cell signaling therapies and immunotherapies as well as applied modern radiotherapy. Latin America represents several cultures in developing countries with a special population that deserves the best care regarding these challenging diseases called central nervous system tumors. The Society for NeuroOncology Latin America (SNOLA) was created with several missions, including: n Being a multidisciplinary society dedicated to promoting advances in neurooncology through research and education in Latin America; n Providing tools to our members to help understand CNS tumors, and to improve outcome and quality of life for our patients. We will allow access to the Neuro-Oncology journal; create the best and most active board of directors in Latin America in all areas of neuro-oncology; and promote the biennial

Above: Foundation President of SNOLA Dr Marcos V. C. Maldaun

SNOLA meeting and other satellite courses, tumor boards and academic activities; n Integrating all specialties and societies related to neuro-oncology; n Cooperating with all multicenter groups that study CNS tumors; n Being an active voice in Latin America and trying to improve assistance and care for neuro-oncology patients; n Collaborating with all of the activities of the Society for Neuro-Oncology (SNO), European Association of Neuro-Oncology (EANO), Asian Society for Neuro-Oncology (ASNO) and representing Latin America in the World Federation of NeuroOncology Societies. To achieve these goals one of our first moves has been the development of articles and interactive lessons for medical professionals in the following areas and studies. These will soon be available online for members:

1. applied neuro anatomy 2. brain metastasis 3. CNS lymphomas 4. endoscopy for brain tumors 5. high grade gliomas 6. imaging and pathology 7. low grade gliomas 8. meningiomas 9. new technologies and new drugs in neuro-oncology 10. palliative care and pain 11. pediatric neuro-oncology 12. peripheral nerve tumors 13. pineal lesions 14. pituitary lesions 15. research in neuro-oncology 16. skull base tumors 17. spinal tumors SNOLA is now planning a biennial conference in order to update doctors in Latin America on the ever-changing area of neuro-oncology. We plan to hold our first meeting in 2016 in Rio de Janeiro. This is a very important project, essential for all professionals who work with CNS tumors. I’m sure that all this effort involving SNOLA’s creation will be rewarded with the best assistance and care for our patients. This mission requires the participation of all - learning and maturing every day, making SNOLA helpful in order to move forward and creating a strong neurooncology community in Latin America. n

To get to know more about SNOLA, please visit www.snola.org

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A family affair The diagnosis of a brain tumor for an American woman led her family to set up a foundation aimed at funding research and helping others in the same situation

THE scenario is all too familiar. With little or no warning, someone who is vibrant and healthy experiences uncharacteristic symptoms such as headaches, a seizure, vision issues, slurred speech, compromised balance, confusion ‌the list goes on. The diagnosis: brain tumor. The treatment: surgery, if possible, followed by the current standard of care. Next steps lead to recovery and trying to understand this intractable disease. Finding a new normal - for both the patient and their loved ones – helps the family move forward. Susan Sontag of Ponte Vedra Beach, Florida (USA) is an inspiration to all who know her. Susan has not allowed the diagnosis of an inoperable grade 3 anaplastic astrocytoma more than 20 years ago to define her life. However, it is that diagnosis and the way Susan, her husband Rick and their children have dealt with it which have defined the programs of The Sontag Foundation for the past twelve 12 years. It has also provided the impetus for the creation of a new nonprofit organization, The Brain Tumor Network. In 2002 entrepreneur Rick Sontag had an opportunity to sell his company to a subsidiary of General Electric, and as he reflected on his career he knew he wanted the proceeds from that sale to be used for the greater good. Rick and Susan decided to establish a family foundation; their motivation was to do something to make a difference for brain tumor patients like Susan. During the formation of The Sontag Foundation, a USA-based private foundation, the family hired Kay Verble as the first Executive Director. Kay and the board of directors conducted the due diligence to 38

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Above: Entrepreneur Rick Sontag and his wife Susan who set up the Sontag Foundation after Susan was diagnosed with a brain tumor.

help identify ways the Foundation could positively impact the field of neuro-oncology with the ultimate goal of improving outcomes for brain tumor patients. The Foundation then called upon the expertise of a few members of the scientific community to help identify gaps that program funding from The Sontag Foundation could help fill. Rick and Susan and their family decided to create a career development award to fund outstanding brain tumor researchers for four years so those scientists could establish their first independent research programs. Through the Distinguished Scientist Award (DSA), the Foundation supports, mentors and strives to keep scientists engaged in research related to brain tumors. To date, 37 early career scientists in the United States and Canada have received DSA grants. Overviews of the funded research can be found at www. sontagfoundation.org. Twelve years later, the DSA remains the flagship program of the Foundation,

but the family has continued to search for new ways to improve the lives of brain tumor patients. In their home community of northeast Florida, that desire led to establishing a support group for brain tumor patients and their families. The monthly support group meeting allows patients to share information and experiences with each other. Through experiences in the support group, the Sontags identified a gap in informational services available to brain tumor patients. It became increasingly clear that individuals being treated in community-based settings who sought information about treatment options outside standard of care, including clinical trials, could not easily find reliable or personalized information. With the knowledge gained through funding brain tumor research and the expanding network of relationships with luminaries in the field, The Brain Tumor Network (BTN), the newest initiative of The Sontag Foundation, was launched to bridge this informational gap. Through its common


roots with The Sontag Foundation, BTN has formed a robust network of medical professionals with expertise in treating brain tumors. This diverse group of practitioners volunteers their time and expertise to BTN to assist the network in an advisory capacity. Kay W. Verble serves as the Executive Director of both organizations. The Brain Tumor Network (BTN), a public charity in the USA, was established with the mission of assisting adult brain tumor patients and care providers who seek personalized information about treatment options. All the informational services of BTN are available to adult brain tumor patients in the United States of America and are provided at no charge to patients and care providers. It is important to note that BTN does NOT make treatment recommendations nor is BTN affiliated with any institution or hospital. The Brain Tumor Network (BTN) can assist adult brain tumor patients and care providers in the USA during several key time-points for decision-making: 1) diagnosis, 2) progression and 3) recurrence. Patients should always continue their treatment programs while seeking information from BTN; patients should

Above: Executive director of BTN, Kay W. Verble (right), discussing a case with BTN staff member Karen Greenan, RN, BSN, CCRC.

also discuss with their physicians the information provided. BTN’s informational services include assisting adult brain tumor patients in securing consultations and second opinions, or in identifying centers of excellence to access specialty care. The organization also assists patients with accessing and utilizing their medical records so that they can have more informed dialogues with their physicians. Under certain criteria BTN can assist patients in securing enhanced diagnosis

through facilitating pathology review and molecular testing of tumor tissue. If a patient wants to explore the possibility of participating in a clinical trial, BTN staff will review relevant medical history and conduct a personalized clinical trial sort. Once relevant clinical trials are identified, BTN will enlist the expertise of their network of neurosurgeons, neuro oncologists and pathologists to prioritize a manageable list of clinical trials to be discussed with care providers. BTN’s staff can then work with patients and their care providers to access trials. It is with continuing and constant dedication to the vision of Rick and Susan Sontag that BTN now serves brain tumor patients and continues to make a difference in their lives as they navigate the rigors of treatment. n

For additional information, go to www.braintumornetwork.org. If you or a loved one is an adult brain tumor patient in the USA, call 1.844.286.6110 toll free to request the informational services of The Brain Tumor Network.

Australians on a mission: to increase five-year survival to 50% by 2023 THE Cure Brain Cancer Foundation is based in Australia and their mission is to increase five-year survival to 50% by 2023. They run a series of fund-raising/ awareness raising walks throughout the year and generously donated 30,745 kms to the IBTA’s Walk Around the World for Brain Tumours in 2014. Each of the 6,149 participants in their events, walked 5 kms. A fantastic effort! n

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DON’T LET THEM FIGHT IT ALONE.

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

Brain cancer kills more children than any other disease. Cure Brain Cancer Foundation is the largest dedicated funder of brain cancer research in Australia. - subscribe to our newsletter - view our current research projects

curebraincancer.org.au Call +61 2 9550 5244 info@curebraincancer.org.au

Brain Tumors Research Association

To support

neuro-oncological research The Association’s main goals are to improve basic, translational, and clinical research in the field of brain tumors and to support hospital services.

To act specifically 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 Frenchspeaking Western Africa.

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 40

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UK patients and healthcare professionals work together to put brain and spinal cord tumours at the top of the clinical research agenda Laura MacDonald on behalf of the JLA Neuro-Oncology Group UK THE Neuro-Oncology Priority Setting Partnership (N-O PSP), based in the United Kingdom, is delighted to announce the results of its consensus project to determine the top ten priorities for clinical research in brain and spinal cord tumours. The Top 10 were identified through a Priority Setting Partnership exercise guided by the James Lind Alliance (JLA), a non-profit initiative that brings patients, carers and health professionals together to identify and prioritise the Top 10 uncertainties, or 'unanswered questions', that they agree are most important. This information will help ensure that those who fund health research are aware of what really matters to both patients and clinicians.

WHO decides what research should be done in brain and spinal cord tumours? Often it is academics and researchers rather than the people most directly affected - those who are living with a brain or spinal cord tumour and the healthcare professionals who care for them. The James Lind Alliance (JLA) set out to change this by developing ‘Priority Setting Partnerships’, which bring patients, carers and health professionals together to identify and prioritise clinical questions that are as yet unanswered. Priority Setting Partnerships have been established for a wide variety of conditions, including multiple sclerosis, dementia, spinal cord Injury and palliative and end of life care.

The Process In July 2013, a group of UK health professionals, patient advocates and carers established the first James Lind Alliance Priority Setting Partnership in neuro-oncology. After a period of planning, patients, carers and those involved in brain and spinal cord tumour management – a wide range of clinicians, allied healthcare professionals, nurses and others – were contacted through multiple

Above: The final Neuro-Oncology Priority Setting Partnership (N-O PSP) workshop in London

professional, clinical and charity databases (as well as media outlets) and asked to submit their questions through the www.neurooncology.org.uk website or via mail. Over 600 individual questions were received from around 200 people. Submissions were primarily from the UK but some were from Australia, France, Ireland, Italy, the Netherlands and the USA. After merging duplicate questions and rejecting questions that were out of scope, questions where the answer was known and questions that could not be put in a "PICO format” (for a randomised, controlled trial) positive weighting to go through to the next round was given to paediatric and spinal cord questions along with questions

submitted repeatedly. The subsequent 44 prioritised questions were surveyed a second time asking the brain tumour community to chose their most important 10 questions. 200 people took part in this broad prioritisation process and the 25 questions with the highest score went forward to the final prioritisation meeting in November 2014.

Decisions are reached At the final prioritisation workshop in London in November - attended by patients, family members, health professionals and charity representatives - the final step took place using a modified Delphi and Nominal Group technique organised by independent Brain Tumour

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Above: Project lead Dr Robin Grant presenting to the priority setting group

Above: Patients and health professionals worked collaboratively and prioritised topics for clinical research into brain and spinal cord tumours

experienced JLA staff: choosing the 10 “top” questions about brain and spinal cord tumours that are, in the opinions of those surveyed for this project, the most important for research to answer. Project lead, Consultant Neurologist Dr Robin Grant (Edinburgh) said: “We are delighted to have achieved our goal of identifying the top

10 clinical research priorities in brain and spinal cord tumours, as selected by people diagnosed with these diseases and those who care for them, whether personally or professionally. These final 10 questions cover a wide range of topics including diagnosis, treatment and support. They cover brain and spinal cord tumours, and they apply to the very young

through to the over 60s.” Dr Grant and other members of the Neuro-Oncology Priority Setting Partnership’s core group have already started liaising with the UK’s National Institute for Health Research (NIHR), Cancer Research UK (CRUK) and other organisations about identifying funding and researchers to initiate studies based on the top ten priorities. The goal of the project is to answer these crucial questions and improve diagnosis, treatment and support for people with brain or spinal cord tumours and their families. n

Top 10 priorities* 1. Do lifestyle factors (e.g. sleep, stress, diet) influence tumour growth in people with a brain or spinal cord tumour? 2. What is the effect on prognosis of interval scanning to detect tumour recurrence, compared with scanning on symptomatic recurrence, in people with a brain tumour? 3. Does earlier diagnosis improve outcomes, compared to standard diagnosis times, in people with a brain or spinal cord tumour? 4. In second recurrence glioblastoma, what is the effect of further treatment on survival and quality of life, compared with best supportive care? 5. Does earlier referral to specialist palliative care services at diagnosis improve quality of life and survival in people with a brain or spinal cord tumour? ** 6. Do molecular subtyping techniques improve treatment selection, prediction and prognostication in people with a brain or spinal cord tumour? 7. What are the long-term physical and cognitive effects of surgery and/or radiotherapy when treating people with a brain or spinal cord tumour? 8. What is the effect of interventions to help carers cope with changes that occur in people with a brain or spinal cord tumour, compared with standard care? 9. What is the effect of additional strategies for managing fatigue, compared with standard care, in people with a brain or spinal cord tumour? 10. What is the effect of extent of resection on survival in people with a suspected glioma of the brain or spinal cord? * Priorities relate to any age. ** See the interview with Professor Dr Christine Marosi in this magazine to read about a study that may help answer question 5 in an Austrian context.

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If you are able to help fund or commission research involving one or more of the Neuro-Oncology Priority Setting Partnership’s Top 10 priorities for brain and spinal cord tumours, please contact Laura MacDonald at jlagroup@exseed.ed.ac.uk. Find out more about the project by visiting www.neuro-oncology.org.uk For more information about the James Lind Alliance, see http://www.lindalliance.org/

James Lind Alliance Neuro-Oncology Priority Setting Partnership Stakeholders, Advisors and Coordinators Nazia Ahmad (occupational therapist), Sebastian Brandner (professor of neuropathology), Lucy Brazil (adult neuro-oncologist), Helen Bulbeck (brain tumour charity), Michael Carbutt (patient), Tessa Clarke (JLA advisor), David Crowe (JLA advisor), Julia Day (coordinator), Stuart Farrimond (patient), Sue Farrington-Smith (brain tumour charity), Catherine Fitton (graphic designer), Niall Grant (technical support), Robin Grant (consultant neurologist), Paul Grundy (consultant neurosurgeon), Diz Hackman (physiotherapist), Caroline Hampden-White (children’s cancer charity), Kirsten Hopkins (adult neurooncologist) Ashkan Keyoumars (consultant neurosurgeon), Keith Knight (patient), Kat Lewis (speech and language therapist), Jamie Logan (clinical nurse specialist), Laura MacDonald (coordinator), Marilyn Monk (patient), Richard Morley (JLA advisor), Phillipa Murray, (brain tumour charity), Jane Neerkin (consultant in palliative care), Kathy Oliver (brain tumour not-for-profit), Isabella Prichard (family member of a patient), Leanne Prichard (patient), Gail Quinn (Cochrane managing editor), Julie Read (general practitioner) Ally Rooney (psychiatry fellow), David Smith (patient), David Walker (professor of paediatric oncology), Maddie West-Nelson (patient), Claire Wiseman (patient), Crispin Zeeman (brain tumour charity), Karolis Zienius (researcher)

The Neuro-Oncology Priority Setting Partnership thanks all those who contributed to the project. In particular, we would like to thank our stakeholder group members and our funders: brainstrust, The Brain Tumour Charity, Brain Tumour Research, Children with Cancer UK, The Cochrane Collaboration, Edinburgh and Lothians Health Foundation and the International Brain Tumour Alliance.

elisabethrosmansilla@yahoo.es ggcastellvi@gmail.com

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There is hope - there is always hope… and this positive attitude makes me help others Bruce Blount 20-year brain tumor survivor, New Jersey, USA MY name is Bruce Blount and 20 years ago I was treated for an ependymoma brain tumor. It was located in my fourth ventricle with “some brain stem involvement”. I was operated on and then received fractionated radiation treatments. I spent three months in the hospital, getting speech, physical, occupational, and other therapies and treatments. Annual MRIs confirmed all was clear. It was not an easy time though. I actually needed to re-learn how to sit up from a lying position. I progressed from a bed to a wheelchair, a walker, and then a cane, which I keep close by. I have some residual deficiencies: double vision, staggering, memory problems, word finding difficulties - and others.

My path in life has led me to many new and enriching experiences Years after this ordeal I decided to act on the belief I had - that I should do whatever I could to help others going through a similar situation. I felt extremely fortunate to be alive and was certain that God spared me in order to help others. Through the years I have accomplished many things. I am not bragging, rather just mentioning the path my life has taken. I am the facilitator of the Adult Ependymoma Online Support Group - part of THE Brain Trust. I co-facilitate a local in-person group, the Monmouth and Ocean County Brain Tumor Support Group in New Jersey. I have been to Washington, DC, where I spoke to politicians or their representatives about brain tumor related subjects. I have sat on brain tumor conference planning boards and I have spoken at several brain tumor conferences. This year will be my fifth annual brain tumor walk - where I (so far), have raised more than $20,000 for brain tumor research. 44

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Above: Bruce, now 57, has completed five walks for brain tumour research raising more than $20,000

I have been featured on CNN.COM. I have made several videos which are now on You Tube, and I have my own website. You can check out all of the above activities by visiting the websites listed at the end of this article.

For those who are feeling lost, bewildered and desperate – there is hope Rather than looking at these things as accomplishments, I look at them as blessings I have received, and feel that I am doing what I should be doing. I remember the lost, bewildered and desperate feeling I had when I first received the dire diagnosis of a brain tumor. When I heard those dreadful words, I assumed that it was a death sentence, and my life would end at the young age of 36. I had no idea that there was hope - or that I would be writing an article for the IBTA that would be read across the world! I have learned that research for brain

tumors lags far behind research for other diseases, and it is woefully underfunded. There is no known cause or cure. I have made many friends, and I have lost many friends. I don’t have to tell you about the losses. The reason you are reading this is because you have been affected by a brain tumor. You may have had your world turned upside down. You may be forlorn, desperate for help. The losses make me more resolute to do what I can. There is hope - there is always hope. It is not unfounded, it is real. The cure is out there, and all we have to do is find it. But, it is going to take money - a huge amount of money. I have researched the various charities looking specifically to find one that spends the majority of its donations on research projects. I chose to devote my attention to Virtualtrials.com

Do something, anything! Feel free to do your own research. The important thing is to do something, anything you can. Believing in God has helped me through this path. It may or may not be where you are right now. Check it out - seriously. He has brought me peace and strength. Support groups are maybe the best thing ever. Remember when you were first diagnosed? You may have thought: “What do I do now?”, or “How long will I live?” There are folks just getting their diagnosis today. What would you want to tell them? Join a support group. Help others. Get help yourself. Make some awesome new friends. If there isn’t a support group where you are - start one. All of the major brain tumor organizations will help you get started. So what is the secret? Why have I survived so long? Was it any particular lifestyle, or supplement? No, not really… I am a 57 year-old man, with too big a belly. I exercise when my pants get tight. I take


no supplements, or medicines. I really have no clue why I am still here. I am blessed in that I was treated, and never had a recurrence. I’m seizure-free. I get annual MRIs and visits to the neuro-oncologist then back home to fight some more. In closing, I would like to say something I truly believe - whether you have a brain tumor, or a different disease or even if you are disease-free, you must have a positive attitude. Be happy. Be alive. Enjoy your life. n

Please feel free to contact me anytime. I want feedback, comments, advice, or whatever. Brub58@comcast.net Bruce Blount’s story on You Tube https://www.youtube.com/ watch?v=YOvhg30xWgk Adult Ependymoma Online Support Group http://braintrust.org/groups/ adultependy/

Monmouth and Ocean County Brain Tumor Support Group http://www.njbt.org/startMOCBTSG.cfm Walk to End Brain Tumors https://www.walktoendbraintumors.org/ Bruce Blount on CNN http://www.cnn.com/2008/ HEALTH/05/21/tumors.irpt/index.html Bruce Blount’s website https://sites.google.com/site/ adultependymoma/ Virtual Trials (The Musella Foundation) http://www.virtualtrials.com/

Raise awareness of the challenges of brain tumours - plan an event for International Brain Tumour Awareness Week (25th to 31st October 2015)

IBTA Chair Kathy Oliver (second from right) gave the opening presentation at a conference in Bologna, Italy in 2014 focusing on rare adult cancers. There was a special session on brain tumours. Among the invited speakers were Dr Enrico Franceschi, Bologna (second left), Professor Martin van den Bent, The Netherlands (third left) and Dr Alba Brandes, Bologna (fourth left). Dr Paolo Casali, Milan (far right), who is the Coordinator of Rare Cancers Europe, also participated in the conference. n

The national Australian organisation for the brain tumour patient, family and caregiver.

TRANSFORMING TOMORROw, TODAY 4,000 children are diagnosed with a brain tumor each year. n Brain tumors are the leading cause of cancer-related death in children under the age of 14. n Current treatment options are limited and can provide damaging long-term side effects to a child’s developing brain. n The average survival rate for all children with malignant brain tumors is 66%. n Nearly 15,000 men, women, and children are diagnosed with a GBM each year. n GBM is a highly aggressive and the deadliest form of brain cancer. n Only 5%-10% of all diagnosed will live beyond 5 years. n Brain tumors cannot be prevented, and no cure exists today. n There are more than 120 different brain tumor types; each genetically different. n Brain tumors are often deadly, impact the quality of life, and change everything for patients and their loved ones.

Learn more at www.braintumor.org National Brain Tumor Society is fiercely committed to finding better treatments, and ultimately a cure, for people living with a brain tumor today and those who will be diagnosed tomorrow. This means effecting change in the system at all levels. It’s time to build on progress and transform tomorrow, today.

BTAA Inc offers: • hope and peer support; • links to brain tumour support groups; • educational grants for allied health professionals; • information to assist making treatment decisions; • advice to government and policy makers; and • resources for adult and paediatric persons diagnosed with a brain tumour

from the patient, family and caregiver perspective.

www.btaa.org.au

Freecall 1800 857 221 ABN 97 733 801 179. Incorporated in the ACT: AO4837

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Out of Africa: the first sub-Saharan conference on children’s cancer Alan Davidson, Anthony Figaji and Jeannette Parkes For the paediatric neuro-oncology multidisciplinary team, University of Cape Town academic hospital complex

THE dramatic improvement in the treatment of children with brain tumours in high income countries in the last part of the 20th century - mainly resulting from the rise of multimodal therapy and reflected in recorded SEER paediatric survival data over the past 40 years - has not been mirrored in other parts of the world. Our organisation, the International Society of Paediatric Oncology (SIOP) believes that resources are scarce and multidisciplinary care largely absent in middle and low income countries (LMIC) where the vast majority of children with cancer live and are treated. We hope that the SIOP 2015 conference will start to change that. The first sub-Saharan African meeting of SIOP will be held in October in Cape Town, South Africa. This will be the 47th annual scientific meeting of SIOP, gathering the best and brightest in paediatric oncology from around the world. Each meeting brings together cutting edge scientific research, as well as research directed at solving problems in low and middle income settings. To this end SIOP has developed a working group dedicated to Paediatric Oncology in Developing Countries (PODC). There are also streams dedicated to nursing, parents and advocacy groups. The focus of the Cape Town meeting is "Science and Development, 21st Century Priorities for Childhood Cancer". This aims to pursue scientific excellence while seeking to support and uplift paediatric oncology in LMIC. We are keenly aware of our responsibility to attract and accommodate doctors and nurses from LMIC, particularly those in Africa. 46

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Above: The venue: Cape Town International Convention Centre

SIOP and the local organising committee will raise finance to fund as many SIOP scholarships as possible for our conference. These scholarships enable LMIC participants who have submitted an abstract to the meeting to attend, and thereby increase access for practitioners coming from less privileged societies. Providing this access to new learning is as important as creating networks of willing partners in high income countries who are able to help inspire, to build partnerships

and to foster collaborations. Thus we aim to make a tangible change in the lives of children living with cancer in LMIC, and their families. And we also seek to fulfil the aim of SIOP that “No child should die of cancer”. At this year’s SIOP we recognise the unique opportunity to provide paediatric oncology and paediatric radiotherapy teaching to groups of doctors and allied professional staff who may not normally be able to attend such meetings. We have introduced the concept of


a Fellows Educational Workshop which will run for two days prior to the main meeting. Focusing on interactive training using actual cases, the programme will include a dedicated session on paediatric brain tumours (PBT). For the first time, a state of the art PBT symposium will form part of the main track of the conference. In addition, paediatric brain tumours will feature in the Pediatric Radiation Oncology Society (PROS) programme on Education Day. PROS has made special arrangements to attend the meeting because they realise the importance of advancing treatments in LMIC. We in Cape Town have established a strong agenda to advance the cause of paediatric brain tumours specifically in southern Africa and beyond. Our platform constitutes a regional centre of excellence with respect to surgery, radiotherapy and neuro-oncology and therefore is well placed to coordinate this project. We also run an annual brain tumour meeting which attracts participants from the whole continent and which seeks to improve standards of care by encouraging multidisciplinary cooperation. We participate in efforts to create safe and effective, locally

Above: Table Mountain from Blaauwberg Beach

appropriate treatment guidelines for children being treated in LMIC. Thus we are beginning to shine a light on these many children with brain tumours whose care has been relatively neglected. SIOP 2015 is a great opportunity to provide much-needed education locally for treatment of paediatric brain tumours. It is also a wonderful chance to link research organisations and funders with local organisations throughout Africa. With the magnificent back-drop of Table Mountain, the beaches, the winelands, the safaris and the drums of Africa, we hope

to attract a large contingent of participants who not only want to discover Africa, but who can help uplift paediatric cancer care globally. We will not disappoint. We hope that you will join us in making this African SIOP a huge success, and look forward to hosting you in Cape Town in October 2015. n

For more information, visit http://www.siop2015.kenes.com

Above: African wild life

Above: Cape winelands

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Helping build a strong new generation of cancer specialists and researchers in Europe Dr Matthias Preusser, Associate Professor, Medical University of Vienna, Austria IBTA: Where did you spend your childhood? Matthias Preusser (MP): I was born in Austria, but spent much of my childhood abroad, because my father´s job as a civil engineer for an international construction company took us to France, Mexico, Peru and Saudi Arabia for periods of months to years at a time. I enjoyed the travelling and the different cultures very much and have good memories of that time. IBTA: Did you come from a family environment that had a connection with medicine or research? MP: My family environment is not deeply connected to biology or medicine and there is a diverse mix of occupations among our family members, which includes engineers, journalists, attorneys and teachers. Besides me, there is only one uncle with a medical profession in our family and he is an internist. IBTA: What attracted you to medicine and later to the brain tumour area? MP: I was always interested in biology and as a teenager I grew increasingly interested in the functioning of the brain. I started reading books on neurological sciences and was particularly fascinated by reports of neurological syndromes. I felt that the sometimes bewildering deficits caused by brain injury or other pathologies and the detailed analyses by authors such as Oliver Sacks, Vilayanur Ramachandran and Alexander Luria offered highly interesting insights into the functioning of the brain. This interest ultimately made me join a team of researchers at the neuropathology department in Vienna towards the end of medical school, because I wanted to learn more about the biology and diseases of the brain. The complexity of brain tumor pathology and molecular biology quickly 48

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clinical work and in research. In the past few years I have also devoted some work to brain metastases, for which there has for a long time been too little research. In addition, I am very interested in rare brain tumour types such as aggressive meningiomas and primary CNS lymphomas. I feel that the diversity of pathologies and clinical courses one encounters in neuro-oncology is highly interesting and stimulating.

Above: Brain tumour specialist Dr Matthias Preusser

attracted my attention and made me pursue a career in neuro-oncology. IBTA: What is your specialist area of interest within the neuro-oncology field? MP: The treatment of gliomas is a main focus in neuro-oncology and is also a main field of interest for me, both in the

IBTA: You are involved with the European Society for Medical Oncology (ESMO) Young Oncologists Committee. What type of work are you doing for that committee and what are your thoughts on encouraging more young doctors to specialise in neuro oncology? MP: The ESMO Young Oncologists Committee seeks to strengthen young oncologists’ skills, knowledge and expertise and to provide a platform for networking with other medical oncologists and oncology professionals in Europe.

Above: Matthias Preusser enjoying time with his wife and children


I have been part of this committee for some years and we organize workshops, scientific sessions and netwoking events for young colleagues at ESMO conferences and provide educational content for the ESMO homepage and e-newsletters. Our goal is to help build a strong next generation of cancer physicians and researchers in Europe who are able to further advance the field and provide the best possible care to cancer patients. I feel that for young doctors neurooncology is a very attractive field due to its multidisciplinarity and strong research focus. There are many riddles to solve on brain tumours and therefore there are plenty of opportunities to make significant contributions to the development of the field. IBTA: What is the biggest challenge facing young oncologists today who enter the brain tumour field? MP: I think that as for any newcomer the most important challenge in the beginning is to find a good mentor. The work with brain tumours is demanding on several

levels and it takes good guidance to learn adequate medical decision-making, appreciate the interaction with patients and relatives, and understand the constant critical reflection of scientific data that is needed to provide good patient care and to do good science. IBTA: What do you most enjoy about your work in neuro-oncology? MP: I find that working with brain tumour patients can be very rewarding on a personal level and and I enjoy working within a multidisciplinary team and to be able to interact on a daily basis with professionals from various medical disciplines. For me it is also very important to work in an academic institution and in a scientific environment, because I want to continuously try to contribute to scientific advance so we can ultimately improve patient outcomes. IBTA: Do you anticipate any significant breakthrough in brain tumour therapies in the next ten years? If so, in what area? MP: I certainly do hope that we manage to improve our therapies for brain tumour

patients. At the moment immunotherapies hold some promise and we will see in the next few years whether we can indeed harness the immune system to effectively fight brain cancer, as has recently been sucessfully done in other tumour types such as melanoma. For brain metastases we will very likely see an increasing role of medical therapies, especially of targeted agents, in addition to the established therapy options such as radiotherapy and surgery. I also think that we may see new developments and new therapy standards in rare tumour types, for example in meningiomas and in brain lymphomas, as some very interesting study concepts are emerging in these tumour types. IBTA: How do you cope with the emotional and psychological challenges to you personally arising from your work? MP: I think it is important to spend time with family and friends, to have hobbies and take some time off now and then. Practicing medicine can be very demanding and I feel it is important to keep a healthy work-life balance to stay fresh and to not burn out. n

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Blogging about my brain tumour gives me the opportunity to raise awareness Dawn Hamill, brain tumour and breast cancer blogger UK We featured Dawn Hamill’s brain tumour blog, Mind the Gap A-Z, in our 2014 edition of Brain Tumour. Following that, Dawn, who lives with the consequences of her meningioma brain tumour, was diagnosed with breast cancer. Dawn has blogged her way through treatments for her brain tumour and breast cancer. Now she shares her excitement about being named as one of two Highly Commended Runners-Up at the UK National Blog Awards in April. As well as reporting this news in Brain Tumour, we have pleasure in reproducing two of her blogs (see right and next page).

Above: Brilliant blogger Dawn Hamill

“WHY should I enter the UK Blog awards?” I said to a friend when he suggested I did so last summer. “You might win.” he replied, “And you will reach more people in the process…” I started writing my blog after brain tumour surgery shattered my old life. I wanted to raise awareness of brain tumours and reach out to others on similar journeys. I hoped to show that whilst such tumours do - more often than not - change lives, you can still have a life. Even when, like me, they cause disabilities, fatigue and epilepsy. So on 15 December 2014 I was utterly thrilled when I woke to a bleeping mobile as texts flew in from friends screeching that I was through to the top ten in the Individual Health Category of the UK National Blog Awards. I later learned that a 50

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record-breaking 42,000 public votes were cast for the 2000 entrants for the awards. Short-listed blogs for the 14 categories then faced an expert panel of judges in December 2014. The awards were announced on 17 April 2015 at a glitterball evening in the prestigious Montcalm Hotel in London, UK. The Blog Awards was a really fun and interesting event and I am pleased to tell you that I was fortunate to be selected as one of two Highly Commended Runners-up in the Individual Health category! Entering the Blog Awards gave me the wonderful opportunity to further raise awareness of brain tumours. I am excited and thrilled to be a runner-up and it was great on the evening to have the opportunity to meet other bloggers and swap stories. n

Above: Dawn at the UK National Blog Awards in London

Wednesday, March 11, 2015:

Who am I now? ONE of the most common questions asked when I meet someone new is: “What do you do?” I used to reply: “I am a nurse.” I knew who I was, I had been that person for over thirty years, I grew into that role. I would drop everything for someone in need. I was a carer. A leader. A finisher. But now I am split in two, maybe three, possibly four... Nowadays approaching the crossroads is Dawn the nurse who still wants to step in when someone is ill. She wants to lead projects. She wants to work in a charity, helping others. On the opposite track is Dawn the explorer. She starts projects; crocheting flowers, knitting a cardigan, researching all sorts of ideas before leaving them unfinished in a corner. On to something new... Then there is Dawn who wants to forget that cancer or brain tumours exist, concentrate on living life; socialise as much as my energy allows, plan holiday after holiday, drink coffee and eat cake (home made of course!). After my brain tumour I had settled on a route. But now after breast cancer I am a Blogger in transition. Questions whir like a tornado in my mind. Do I need a role any more? Does it matter that I am not finishing projects? Am I Shackleton but without the ice and snow? One thing I am sure about is that this new curly haired Dawn will enjoy exploring who I am now! “Difficulties are just things to overcome, after all.” (Ernest Shackleton)


Friday, March 6, 2015:

Raising Awareness of Bandanas for Brain Tumours TODAY is Bandanas for Brain Tumours Awareness Day [in the UK]. As I wait for the results of my 6th annual brain scan to check all is well, I reflect on how a brain tumour changed my world. In 2008 the shock diagnosis of a brain tumour catapulted me into emotional shut down. When I asked the neurosurgery registrar to give me the hard facts he looked me in the eye and said: “If the tumour is malignant you will have about 18 months to live; if it is benign you will live but it will be a different life.” My overriding thoughts were; benign, that’s good isn't it? Get in there, get it out and I will get on with my life! The words “you will live a different life” were but a background murmur.

I had no idea what a meningioma was. I learnt that it was a tumour growing in the meninges; the layers protecting the brain and spinal cord. Meningiomas usually grow inwards putting pressure on the brain. The majority of meningiomas are low grade (“benign”). In my opinion the words “benign” and “brain tumour” are not comfortable bed partners. Benign is defined in the Oxford Dictionary as: “1.gentle, mild, kindly 2.fortunate, salutary. 3. (of the climate, soil) mild, favourable. 4. In medical terms not malignant”. Other than not malignant I would never associate these definitions with “brain tumour”. In the brain tumour world, the terms “low grade” and “benign” are used interchangeably; low grade seems more apt. Brain tumours are graded between 1 and 4 depending on the degree of

malignancy/speed of growth. Mine was grade 1. Any growth inside the closed skull can cause damage as the tumour grows. In the case of slow growing meningiomas, the brain accommodates gradual growth like a bulb expanding in soil and the tumours can become quite large before obvious symptoms arise. My parasagittal tumour (arising across the middle - between the two hemispheres of the brain) had spread like icing across my head before it caused problems. Brain tumour research is chronically underfunded in the UK, receiving less than 2% of all cancer research funding. Yet research is vital to improve the treatments and diagnosis for the thousands of people diagnosed with a brain tumour each year, ultimately saving lives and improving quality of life.

Catch Dawn’s blog at http://mindthegapa-z.blogspot.co.uk

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I won’t give up

The power of positive thinking helped one teenager cope with a rare brain tumour Jordan Cowen, aged 15 Tasmania, Australia

HI! My name is Jordan. I am 15 and I live in Tasmania, Australia. I am like any other teenager. I love sport, catching up with friends and I have schooling every other day. I enjoy painting, drawing, screen printing, cricket and soccer just to name a few things. I was diagnosed last year on 2nd June with a macro brain tumour called a prolactinoma on the pituitary gland and a disorder called multiple endocrine neoplasia type 1 (MEN-1). I also had hydrocephalus. When I was diagnosed it was a bit of a shock although I had been so sick for so long and it wasn't just "migraines" so the GP said. I had been so vague, I would just sleep and didn't eat much. When I was sick I was that vague that I can't remember much other than sleeping and GP appointments. Even though this had happened I remained so positive, but everyone around me was so upset, because it was a brain tumour and we didn't know if it was benign or cancerous. But I had a theory that if I was positive the results would be benign and if, all of a sudden, I had a downer on life it would be cancerous. Today I am still battling each day as it comes but with a positive attitude. The last MRI showed that the tumour had gone from a starting 4.8cm3 to 2.8cm3 in seven months and my prolactin levels dropped from a starting measurement of 82000 to 400 which is where they should be. But I still have a long road ahead and plenty of appointments, with the neurosurgical team, the endocrinology team and the paediatric team. The tumour 52

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Above: Here I am getting some presents in hospital.

has affected my growth but these teams are still not sure about surgery through the nose. Today I still think that I have gotten off lucky compared to others, like the people with terminal brain tumours. But I’m not as lucky as those without brain tumours. My family and friends were affected hugely because they all thought I was going to die. Once we found out that I had MEN-1 it got better, but that meant that my family had to get tested. My dad also got diagnosed with MEN-1 through me - it is usually the other way around. The rest of my family doesn't seem to want to get tested because they think it'll change their lives. But it's only a test and an endocrinology appointment every six months. Kids have a 50/50 chance of having it, if their parents have. But it can be scary at times because you can get

tumours all over the endocrine system. The only change I've had in my day-to-day life is having to take medication morning and night. Also, I take a medication twice a week called cabergoline that reduces the size of the tumour, but also makes me feel nauseated. I would rather that than a lump in my head. I also have to tell my parents if something weird happens. My family and I thought that we would have to fly to the Australian mainland if I needed neurosurgery but surprisingly, Tasmania has a top neurosurgeon, Mr Andrew Hunn. We met him on one of the ten days that I spent in the hospital. He was really nice and he spoke in my "language", meaning not talking scientifically all the time. There are other great doctors who have helped me such as Dr John Burgess who


recommended me to go on cabergoline instead of surgery. He is really nice also and he would have to be one of my favourite doctors. He is part of the endocrinology department. I also have Dr Michelle Williams who is also really nice. She is part of the paediatric team that helps with my hormones and other strange things that go on throughout my body. I have three things to say to other young people living with a brain tumour in Australia. n keep positive no matter what, because if you don't, it will make things twice as bad as they already are n stay true to yourself and don't let others take you for granted, because you are who you are n nothing is impossible when you put your mind to it

I'll get my friend’s mum to shave my hair because she is a former hairdresser and she'll do a neat job of it. One day I would like to be an ambassador of some sort for IBTA in Australia, as brain cancer is the biggest cancer killer of children. Also, I would like to be an endocrinologist and help people with the condition MEN-1. n Below: This is me getting some fresh air after getting out of hospital (FREEDOM!!!)

Above: This my first MRI ever, this was after the CT scan when I found out I had a brain tumour.

To raise awareness about brain tumours I am going to do a fundraiser and raise a certain amount of money, and when I get to that certain amount of money, I am then going to shave my head.

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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.

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Annual Charity 5K Walk/Run In Support of Brain Tumor Research in Arizona And Beyond

“Walk for Hope”

supported and run by students of all ages

Now in our second decade of existence, SSBTR has already raised over 2.4 million dollars to fund brain tumor research. Our unique 501(c)(3) non profit organization is built on a foundation of dedicated young people and community support.

slands Cayman I

www.SSBTR.org Admin@SSBTR.org 1-888-772-8729

email: btfcaymanislands@gmail.com

www.btfcaymanislands.com

Brain Tumour Foundation Cayman Islands “The Forgotten”

Ph: (345) 916 1811 - Fax: (345) 947 5518

Brain Tumour magazine is distributed in 111 countries THE IBTA has contacts in 111 countries around the world to whom it makes available 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. This year, we have increased our print run to 14,000 copies. These will be sent directly to contacts on the IBTA’s unique database. Copies will also be distributed at major national and international neuro-oncology and cancer conferences throughout the year. Past editions of Brain Tumour magazine are available online here: http://issuu.com/ibta-org/docs/ibta2014 http://issuu.com/ibta-org/docs/ibta-2013 http://issuu.com/ibta-org/docs/ibta-2012 This 2015 edition of Brain Tumour is also available digitally here: http://issuu.com/ibta-org/docs/ibta2015 Afghanistan Herzegovina Republic Greece Jordan

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Measuring health related quality of life (HRQOL) Professor Dr Nikolay Gabrovsky, Head of Neurosurgery, Pirogov University Hospital Sofia, Bulgaria

THE evolution in our understanding about gliomas is mainly related to our knowledge in the field of genetics; different “-omics” studies (for example genomics, proteomics, metabolomics etc.); the advancement of our neurosurgical skills in relation to better modalities for preoperative and intraoperative diagnostic imaging; and the progress which has been made in adjuvant therapy. But another important change has occurred during the last decade or so. This is the increasing importance placed on the notion of “health related quality of life” (HRQOL). In the past, as neurosurgeons, we were mainly focused on ensuring that we obtained the most radical surgical resection which was safely possible with the expectation of better survival for our patients. But today, we are increasingly more concerned about a patient’s quality of life. Therefore, our objective is to ensure longer survival but with the condition of achieving conservation or even improving HRQOL . In other words, in our therapeutic decision-making we are searching for the delicate balance between the extent of tumor removal and the risk of deterioration of HRQOL . On one hand, too little surgery would not lead to significant improvement of the symptoms, whereas radical surgery (too much surgery) may be associated with greater risks of new neurological deficits and deterioration of HRQOL . Thus, HRQOL is an important parameter in the complex evaluation of the patient’s status and the impact of therapy.

Defining HRQOL There are different definitions for HRQOL. But one of the most widespread is from Carol Estwing Ferrans and Marjorie Powers 56

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Since KPS was established, more sophisticated and focused tools have been developed such as the Short Formula - 36 (“SF-36”), the World Health Organisation Quality of Life Questionnaire (“WHOQOL - 100”), and the questionnaire developed by the European Organisation for Research and Treatment of Cancer (EORTC “QLQ-C30) which includes a brain cancer module called the BN-20, a quality of life assessment tool which is specific to brain neoplasms.

What do these tools measure? Above: Neurosurgeon Professor Dr Nikolay Gabrovsky is also Vice President of the Bulgarian Society of Neurosurgery and National Consultant for Neurosurgery in the Bulgarian Ministry of Health.

who state that HRQOL is “an individual’s perceptions of well-being that stem from satisfaction or dissatisfaction with dimensions of life that are important to the individual.” Health related quality of life can be “quantified” with different measuring tools, usually scales or questionnaires. These tools have to conform to two main conditions: reliability (producing the same result in similar conditions time after time) and validity (thorough investigation of the examined problem). One of the first measuring tools introduced in the field of neuro-oncology was the Karnofsky Performance Scale (1949) often called “KPS”. This scale allows patients to be classified within one of ten groupings based on their functional impairment. The maximum (best performance) score is 100 which represents a person who is able to live normally with no physical problems and no evidence of disease.

Most of the questionnaires analyze different aspects of HRQOL such as general health, vitality, physical functioning, mental health, social functioning, etc. Usually the scores of individual patients are compared to the normal scores derived from the general (healthy) population. The results obtained from measuring HRQOL are very important because they can serve as a basis for comparison of different treatment modalities, therapeutic decision-making, monitoring of the quality of treatment and follow-up of disease progression. Here in Sofia, we are developing an online-based tool for measuring QOL which is especially for assessing patients with gliomas. This is called the Sofia Scale - a Self-Assessment Tool (“SoS – SAT”). n

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


www.glia.hr info@glia.hr

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I’ve beaten a brain tumor twice in 13 years Yalcin Tanrikulu, brain tumor survivor Izmir, Turkey

OUR story began in March 2002. It was like any other day, which started with the sunrise. By sunset our life had changed forever. That day around noon, I had a seizure and was hospitalized. We were devastated to hear that I had epilepsy. Then 15 days later, Professor Dr Nurcan Ozdamar (may his soul rest in peace) told us that there was a tumor located near the speech center in the left frontal lobe. The doctor recommended the wait-andsee approach and I was not keen on having brain surgery either. In August 2003 I did have neurosurgery. The pathology was an astrocytoma grade II. The surgery was a success and the neurosurgeon was able to remove all the tumor. I was back on the construction sites just 15 days after the surgery. Six years passed without any problems. I was acting as if I never had the brain surgery. My wife on the other hand was living in constant fear that the tumor could come back. She was reading books on cancer, healthy living and training herself about the disease. She wanted to be prepared if the tumor returned. That day came in 2008. A new MRI after a heavy seizure showed a new tumor: an oligoastrocytoma grade III. Prof Dr Nurcan Ozdamar was the neurosurgeon again. The operation was a great success but he could not remove all the tumor because of the risk of paralysis. Why had the tumor recurred after six years? If I had been more careful with my health, would I have been able to avoid it? Or was it my relaxed attitude towards the disease which delayed the recurrence? Was it good that I delayed having radiation and chemotherapy afer the first surgery? Or would it have affected the six years we had passed full of joy? These 58

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Above: Yalcin Tanrikulu, a 43 year-old father of

Above: A big day for the Tanrikulu family – their

three children who works as a building contractor

daughter Ezgi’s high school graduation

in Turkey. He is a 13-year brain tumor survivor

questions were going through my head. We consulted another neuro-oncologist who said no radiation therapy or chemotherapy was necessary. The MRI checkup after three months was showing that the tumor was stable. But something was not right. I was having seizures with increasing frequency. My wife convinced me to see another neuro-oncologist.

New treatment The new neuro-oncologist was Prof Dr Necmettin Pamir an authority on brain tumors in Turkey. He recommended that I should have radiation therapy with temozolomide which I did. The MRI in April that year was a true joy. The tumor had shrunk so much that it was almost invisible. According to our radiologist Dr. O˘guz Çetinkaya this was the last remnants from the tumor. Dr. Cetinkaya has been instrumental in putting me on an open ended temozolomide treatment. At this point I have to say to patients that it is important to educate themselves about

the disease and always seek a second or third opinion. If they are not satisfied with the answers they get they should go on until they reach the correct answer. Towards the middle of the radiation treatment I lost some of my hair, but I didn’t make a big fuss. My wife was preparing ointments and cures and massaging my head every day. My hair grew back with increasing strength.

Third surgery and paralysis When we were thinking that the worst days were over, in June 2011 had a

Above: Yalcin with his children when they were small


spontaneous brain aneurism. I was taken to hospital. My first neurosurgeon operated for the third time and saved my life. But the aneurism had taken its toll. I was now paralysed and perhaps would never walk again. But we were not ready to surrender.

The miracle After I was discharged I got myself a home trainer. I was working with the trainer every day. Almost a month later, the miracle happened. I was able to walk again. With perseverance and hard work we had won. This did not happen with a magical wand or a miracle potion. It happened with hard work, with little improvements. It happened with hope and belief that I could do it. The biggest obstacles I had were my frequent seizures. Thanks to a specific diet called the ketogenic diet, I am now seizure free. I cannot tell you how much our life has changed thanks to this diet.

Today Today after two tumors and three surgeries, I am very healthy. I went back to my normal life and my work. I drive my own car and visit the construction sites as usual. After the second surgery I started to pay attention to my health. I started to eat a healthy diet, exercise more and try to spend

Above: The Turkish Brain Tumor Support Group pictured at the ASNO 2014 conference in Istanbul. Yalcin is to the right of the poster, IBTA Chair Kathy Oliver is at the far left. The group’s founder, Nihat Karaoglu and his wife Merve are to the left of the poster. Nihat’s sister, Nilay (who is also a brain tumor survivor), is pictured to the right of Yalcin

more time with my family. We laugh a lot. We don’t let the disease shadow our life. During the past 13 years, I’ve had two tumors, I had three surgeries and we overcame it. We did it with perseverance, hard work and belief that we could beat it. Perhaps the biggest irony in my story was that Dr Ozdamar, who had been my neurosurgeon for years, was diagnosed with a brain tumor. We lost him in July 2014. He was a good friend and motivator, and a good doctor. n

Above: Yalcin back at the wheel

Above: The late Dr Nurcan Ozdamar who was Above: The Tanrikulus with three of Yalcin’s doctors

Above: Yalcin (left) and his wife Ilknur (right) with

Yalcin’s neurosurgeon and who was himself

Kathy Oliver of the IBTA (centre)

diagnosed with a brain tumor

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An interview with Sally Davis, new Chief Executive Officer at the National Brain Tumor Society in the United States IBTA: Can you briefly describe your work background? SALLY DAVIS (SD): Prior to joining the National Brain Tumor Society (NBTS), I was the National Vice President, Development and Foundations for the Boys & Girls Clubs of America, one of the largest socially- and civic-focused charities in the US. Previously, I served as vice president for Institutional Advancement at Morehouse School of Medicine in Atlanta, Georgia where I led development, marketing, and communications efforts. I’ve spent more than 20 years working across both the public and private sectors in academia, manufacturing and the pharmaceutical industry. But I’ve really devoted most of my career to working with dedicated volunteers and philanthropists. IBTA: What attracted you to the brain tumor patient advocacy, support and information field? SD: When I met members of the NBTS board of directors, I was really inspired by their commitment and passion. I was also impressed with the organization’s mission and multi-year strategic plan to find better treatments and ultimately a cure for brain tumors. I know this is an underserved patient population, and I’m confident that with the foundation already in place, I can help NBTS deliver even greater progress. IBTA: You have had substantial experience building and working with a large network of volunteers. How do you intend to apply this experience to NBTS? SD: It’s up to us to harness the desire and enthusiasm for change which exists in the brain tumor community and to provide a platform and a direction to channel 60

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the role that the NBTS plays in creating that progress. Third, we also must reach out beyond those affected by a brain tumor diagnosis and into the general population to call with a great sense of urgency - for much needed support and awareness of the challenges of this disease. This means creating broader awareness through marketing and communications efforts, whether that be through advertising, news stories, engaging with celebrities and/or large corporations, etc.

Above: Sally Davis, new CEO at the National Brain Tumor Society

the community’s passion in a way that creates impact. This can be through our public policy advocacy programs, our events, our partnerships, our volunteer engagement, our giving programs, and individual philanthropic forums. IBTA: What, in your opinion, is the biggest fundraising challenge in the not-for-profit arena today? SD: First, I think it is illustrating the impact of a not-for-profit and importantly, how to measure that impact. Second, there are a lot of worthy causes competing for people’s time and attention. Particular to the brain tumor space, this is an area that hasn’t seen the same type of advances that have occurred recently in other cancers, which can be discouraging to many supporters of the cause. So it is imperative that we continually engage those who have been affected by this disease and let them know what progress is happening in the field, and

IBTA: Based on what you’ve learned so far about the world of brain tumors and the patient and caregiver journey, what strikes you as the three most challenging aspects of this disease? SD: I am struck by: 1. The heterogeneity across the brain tumor spectrum. We often reference the fact that there are more than 120 known types of brain tumors, and that many of these different types have multiple subtypes due to molecular and genetic differences. This has major implications for testing potential new therapies and treating patients. 2. The lack of effective ability to prevent brain tumors and (for the most part) get early diagnoses for brain tumor patients. 3. The limited treatment options that exist for patients, and the speed at which malignant brain tumors can take a person. IBTA: You also have experience of working in marketing communications with Morehouse School of Medicine. How do you feel this experience will inform your work at NBTS? SD: My time at Morehouse School of Medicine allowed me to become familiar with the medical academic environment,


which is obviously an important stakeholder group in brain tumor research and development. I hope this experience will allow me to provide another perspective to the staff here on what motivates people to support basic biomedical research at academicbased institutions across the world. 

 IBTA: What gives you the most satisfaction from your work? SD: I’m a goal-oriented person, which makes leading mission-driven organizations like the NBTS a great fit for me, personally and professionally. I’m driven to set aggressive targets for success and then getting to work with a team and making an impact. I’m particularly excited to forge new alliances and partnerships, analyze the research landscape and find funding that will improve the system of brain tumor research and development which will hopefully lead to better outcomes for patients. We have to make a difference – we’ve lost too many lives to brain tumors.

IBTA: What would be the first three items on your wish list for brain tumor patients? SD: 1) A cure, 2) better treatments, and 3) viable solutions for improving and maintaining quality of life. IBTA: How do you relax? Do you have a hobby or a sport with which you are involved? SD: I am a reader. I love listening to music – cellist Yo Yo Ma is my favorite. I like to knit and try to do something active outside when it is warm. In college I ran track. But those days are behind me. However, I take great pleasure in supporting my two sons. One just graduated in December from college and ended his final season as a college football player here in the United States. We’re hoping he may even get the chance to play professionally. My other son is one of the top DJ/MCs in The Philippines and was married in March. So I’m a proud mama these days and spend a lot of my free time with family.

Above: Sally Davis and her two sons, James (left) and Allen (right).

IBTA: Is there anything else you would like to add? SD: I’m excited to get to work on behalf of this community. I know there are a lot of challenges ahead, but the passion, commitment, and drive I’ve seen so far leaves me positive that one day we’ll live in a world without brain tumors. n

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Many thanks to all those organisations around the world who support the IBTA’s awareness-raising activities FOR an organisation or group to be a "supporter" of the International Brain Tumour Awareness Week and The Walk Around the World for Brain Tumours, 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. Organisations wishing to be listed as supporters of the IBTA's two awareness raising activities should contact kathy@theibta.org or walkandweek@theibta.org

42nd Vienna Scout Troop "St. Sebastian" (Austria) n 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 AITC - Associazione Italiana Tumori Cerebrali ONLUS (Italy) n American Brain Tumor Association n Andrew McCartney Trust Fund for Brain Tumour Research (UK) n Angels Among Us Walk, Preston Robert Tisch Brain Tumor Center at Duke (USA) n Anna’s Hope (UK) n ASATE (Spain) n Association pour la Recherche sur les Tumeurs Cerebrales – Paris – ARTC (France) n Associazione Italiana di Neuro-Oncologia - AINO (Italy) n Astro Brain Tumour Fund (UK) n Australian Pituitary Foundation Ltd n Barbara Di Stase Memorial Walk (USA) n B-Strong (Canada) n Belgian Brain Tumour Support (BBTS) n Benny’s World (USA) n Brad Kaminsky Foundation (USA) n Brain and Spine Foundation (UK) n Brain Candy Project (USA) n Braincare BC, British Columbia Cancer Agency (Canada) n b.r.a.i.n.child -Brain Tumour Research, Assistance and Information Network (Canada) n Brainchild Foundation (Australia) n BrainLife (Italy) n BrainLink Services (Australia) n Brain Trekking - CUHK Otto Wong Brain Tumour Centre (Hong Kong) n Brain Tumor Epidemiology Consortium n Brain Tumor Support Group of Northeast Florida (USA) n Brain Tumour Action (UK) n Brain Tumour Alliance Australia n Brain Tumour Association Western Australia n Brain Tumour Bank South West – BRASH (UK) n Brain Tumour Barcelona (Spain) n Brain Tumour Foundation (Cayman Islands) “The Forgotten” n Brain Tumour Foundation of Canada n Brain Tumour Foundation of India n Brain Tumour Ireland n Brain Tumour North West – BTNW (UK) n Brain Tumour Research (UK) n Brain Tumour Research and Support Across Yorkshire (UK) n Brain Tumour Research Campaign – BTRC (UK) n Brain Tumour Research Group - University of Bristol (UK) n Brain Tumour Society (Singapore) n Brain Tumour Support (UK) n Brains Together for a Cure (USA) n Brainstrust (UK) n Brainwaves Brain Tumour Support Group (Leicester) Nottingham & Coventry (UK) n Brainwaves NI (Northern Ireland) n British Columbia Cancer Agency (Canada) n Canadian Brain Tumour Consortium n Cancer Council Australia n Cancer Council Queensland Brain Tumour Support Group (Australia) n Cancer Research and Communications Organization (Kenya) n Cancer World n Capitulo de Neurocirugía Oncológica de la Federación Latinoamericana de Sociedades de Neurocirugía – FLANC (Latin America) n Capitulo de Neurooncología y Base de Cráneo de la Asociación Colombiana de Neurocirugía - ACNcx n Catalan Institute of Oncology (Spain) 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 Recherche Public de la Sante - CRP-Sante (Luxembourg) n Centre for Analysis of Rare Tumors - CART-WHEEL.org (Australia) n CHANCE (CHildren AgaiNst CancEr) Association (Lebanon) n Charles Warren Brain Tumor Awareness Foundation Inc (USA) n Chris Elliott Fund/EndBrainCancer Initiative n Childhood Brain Tumor Association of Taiwan n Children's Brain Tumour Research Centre Nottingham (UK) n Clinica Chicamocha de Bucaramanga (Colombia) n Clowns in the Sky (UK) n Collaborative Ependymoma Research Network – CERN Foundation (USA) n Comprehensive Cancer Center Vienna, CNS Unit: CCC-CNS (Austria) n Croatian Brain Tumor Association – GLIA n Cullather Brain Tumor Quality of Life Center (USA) n Cure Brain Cancer Foundation (Australia) n Danish Brain Tumor Association n Delhi Neurological Association (India) n Dr Marnie Rose Foundation n East Kent Brain Tumour Support Group (UK) n Ed Evans Foundation (UK) n Edinburgh Centre for Neuro-Oncology (UK) n Ellie’s Fund – Brain Tumour Trust (UK) n European Association of Neuro-Oncology (EANO) n European Association of Neurosurgical Societies – EANS n European Cancer Patient Coalition (ECPC) n European Federation of Neurological Associations (EFNA) n GEINO (Spanish Group for Investigation in Neuro-Oncology) n Gentle Giant (UK) n Gerry and Nancy Pencer Brain Tumour Trust (Canada) n Glioblastoma Fundation Michele Esnault – GFME (France) n Gray Matters Foundation (USA) n Grey Matters – Victoria (Australia) n Gruppo Italiano Cooperativo di Neuro-Oncologia – GICNO (Italy) n Head for the Cure (USA) n HeadSmart Be Brain Tumour Aware (UK) n Hersentumor.nl (The Netherlands) n Il Fondo di Gio ONLUS (Italy) n Indian Society of Neuro Oncology - ISNO n Irene ONLUS (ITALY) n Joe di Palma Brain Tumor Foundation (USA) n Josie Foundation (USA) n Italia Glioblastoma Multiforme - cancer al cervello (Italy) n Kartu Lengviau (Lithuania) n Katie McKerracher Trust (UK) n Katy Holmes Trust (UK) n Kinderkrebs Schweiz n 62

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Kings Health Partners Neuro-Oncology Service - Kings College Hospital and Guys and St Thomas Foundation Trust (UK) n Kortney Rose Foundation (USA) n League Against Cancer, County PGZ-Rijeka (Croatia) n Legacy Brain Foundation (USA) n Levi's Star Children's Brain Tumour Charity (UK) n Liverpool Hospital Brain Tumour Education and Support Group (Australia) n Meagan’s Walk - Creating a Circle of Hope (Canada) n Medical University of Vienna, Neurooncology Team (Austria) n Meningioma UK n Michael G. Belz Foundation (USA) n Miranda and Keith Baxter-Russell’s Family and Friends – The Box Hill Bunch (UK) n Monmouth and Ocean County Brain Tumor Support Group (USA) n Multicultural Communities Council Gold Coast (Australia) n Musella Foundation For Brain Tumor Research & Information, Inc (USA) n Naseem's Manx Brain Tumour Charity (Isle of Man) n National Brain Appeal (UK) n National Brain Tumor Society – NBTS (USA) n Neurooncological Section of the Argentine Society of Cancerology n Neuro-oncology Working Group of the German Cancer Society – NOA n Neuroscience Centre, New Queen Elizabeth Hospital, Birmingham (UK) n Neurosurgical Simulation Research Centre – Montreal (Canada) n Nick Gonzales Foundation for Brain Tumor Research (USA) n Nicholas Conor Institute (USA) n NOgIN The Neuro-Oncolgy Information Network (Australia) n Northwestern Brain Tumor Institute (USA) n Oscar’s Angels (France) n Pediatric Brain Tumor Foundation (USA) n Pediatric Brain Tumor Network – PBTN (Japan) n Pediatric Low Grade Astrocytoma Foundation (USA) n Philippine Brain Tumour Alliance n Rare Cancers Europe – RCE n Robert Connor Dawes Fund (Australia) n ROC On! - Run over Cancer (USA) n Romanian Society of Radiotherapy and Medical Oncology n Saitama Medical University Department of Neurosurgery (Japan) n San Diego Brain Tumor Foundation (USA) n Scottish Adult Neuro-Oncology Network – SANON (UK) n Seve Ballesteros Foundation - CNIO Brain Tumor Group (Spain) n Sharing Hope Walk – The Walk, UConn (USA) n Society for Neuro-Oncology - SNO (USA) n Society for Neuro-Oncology Latin America - SNOLA n Sontag Foundation (USA) n Southeastern Brain Tumor Foundation (USA) n Stichting STOPhersentumoren.nl (Netherlands) n Students Supporting Brain Tumor Research – SSBTR (USA) n Svenska Hjarntumorforeningen (Sweden) n Sydney Neuro-Oncology Group North Shore Private Hospital (Australia) n Tali’s Fund (Canada) n Tanner Seebaum Foundation (USA) n Team Tony (Australia) n The Brain Tumour Charity (UK) n The Brain Tumour Charity - Ben Sambrook Fund (UK) n The Cure Starts Now Foundation (US) n Turkiye Beyin Tumoru Hasta ve Yakinlari Dernegi -Brain Tumour Patient & Caregivers' Association (Turkey) n United Brain Tumour Support, Gold Coast (Australia) n Universidad de Santander – UDES (Spain) n University Hospital “Pirogov” (Bulgaria) n Victorian Race Walking Club (Australia) n Voices Against Brain Cancer – VABC (USA) n Walk to End Brain Tumors – New Egypt (USA) n We Can Pediatric Brain Tumor Network (USA) n Werkgroep Hersentumoren – WGHT (Belgium) n Western North Carolina Brain Tumor Support Group (USA) n Worcestershire Brain Tumour Support Group (UK) n Yorkshire Cancer Research (UK) n Zimbabwe Brain Tumour Association (ZBTA) n Z.V.I. Israel Health Consumers n

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Look to the Stars A new way of assessing the impact of childhood brain tumors on families and society TO the Pediatric Brain Tumor Foundation (PBTF), every person diagnosed with a brain tumor in childhood is a Star. It is estimated that 4,600 Stars are diagnosed each year in the United States, and that each year about 670 die before they are 19. This is about one-third of all deaths from disease in this age group. PBTF’s vice president of research and family support Dr Joanne Salcido said: “Every life lost represents a life lived, whether or not the child reached or exceeded the five-year mark commonly included in survivorship studies. “This inspired our Mission team to develop a new measure of the impact of diagnosis. We fostered the concept of years of life lived with disease, or YLLD, to shed light on the number of children who die of a brain tumor.” Dr Salcido took PBTF’s concept to the experts at the Central Brain Tumor Registry of the United States (CBTRUS), and a special project was undertaken in January 2014.

Exciting novel measure CBTRUS President Carol Kruchko said: “The enthusiasm for this project was palpable during all the discussions, and we are all excited to have a new measurement for quantifying the impact a brain tumor has on a child’s life.” This novel measure is being studied by Dr Jill Barnholtz-Sloan, principal investigator and chief scientific director for CBTRUS and an associate director for bioinformatics at the Case Comprehensive Cancer Center (Case Western Reserve University School of Medicine, Cleveland, Ohio), Dr Peter de Blank from University Hospitals Case Medical Center and Ms Quinn Ostrom from the Case Comprehensive Cancer Center. Their study, called “Years of Life Lived with Disease and Years of Potential Life Lost in Children Who Die of Cancer in the United States, 2009” was published in Cancer Medicine in January 2015. 64

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Above: Angel Watson was diagnosed with a PNET brain tumor in March 2008. The first-grader passed away in May 2011, two days before her seventh birthday. Read more about Angel at www.facebook. com/curethekids.

It describes the years of potential life lost (YPLL) and years of life lived with disease (YLLD) in children and young adults who died of cancer in the United States in order to estimate the impact of childhood cancer. Other contributing authors were Dr Joanne Salcido and Ms Carol Kruchko. This study was presented before its publication at the 2014 meeting of the Society for Neuro-Oncology. While survival statistics are the most

commonly reported measure in cancer surveillance, mortality rates cannot capture the burden caused by premature death or chronic therapy in childhood cancer. The study describes two measures of cancer impact to help estimate the effect of childhood cancer beyond simple mortality. The first measure is YPLL. This measure is calculated as the difference between age at death and the average life expectancy for a person with matching


age, race and ethnicity in the US. This is a critical measure to gauge the societal and economic impact of disease. The study determined that central nervous system (CNS) tumors caused the greatest loss of potential life years in the US in 2009 among children under 20 with cancer.

A new potential marker of clinical success YLLD is a new measure of disease impact and may provide a potential marker of clinical success in the future. It was defined as the difference between the age at diagnosis and the age at death for those who die of cancer under 20 years old. This reflects the time spent between diagnosis and death and provides an estimate of cancer’s impact on children and their families. It can be represented as the area under the survival curve for individuals

who die of their disease, and it presents a potential new metric of clinical progress for fatal diseases. In this study, mean YLLD was greatest among children with medulloblastoma/primitive neuro-ectodermal tumor (PNET) and acute lymphoblastic leukemia and smallest among those with atypical teratoid/rhabdoid tumor (ATRT) and high-grade gliomas. The YPLL and YLLD measures were derived from a combination of two large US national data sources - the Surveillance, Epidemiology and End Results Program (SEER) and the National Vital Statistics System (NVSS) - which together provide information on approximately 28 percent and 100 percent of the US population respectively in 2009. Using these databases in combination, the team was able to provide the first description of these statistics in histology-specific tumors. However, the data in this study were limited

to those children who died of their disease prior to age 19 and did not report important measures of quality of life. Future studies investigating YLLD should include children still living with the disease at the time of the analysis. This measure will gain more meaning when combined with a gauge of their quality of life. YPLL and YLLD are important measures of disease impact that complement traditional indicators such as total mortality. This study places the impact of CNS tumors in the context of other common pediatric malignancies and provides another gauge for measuring the impact of disease on society as well as the family. n For more information about the Pediatric Brain Tumor Foundation please see http://www.curethekids.org

The Third Annual Brain Tumor Awareness Day in Argentina Dr Alejandra T Rabadán, MD PhD Honorary President of the Section of Neuro-oncology, Latin American Federation of Neurosurgical Societies (FLANC): President of the Section of Neuro-oncology, Argentine Society of Cancerology; International Committee Chair of the AANS/CNS Tumours Section, American Association of Neurological Surgeons, Argentina SINCE its inception in 2005, the Section of Neuro-oncology of the Argentine Society of Cancerology (SAC) has continued to support annual interdisciplinary activities comprised of neurosurgery, clinical oncology, radiation therapy, radiology and basic sciences. Each year, various events, such as post-graduate courses, symposiums and meetings, occur in an effort to foster the development of neuro-oncology in Argentina. The third annual “Brain Tumour Awareness Day,” took place on 31 October 2014 in Buenos Aires, at the Argentine Medical Association (AMA). The Argentine Association of Neurosurgery (AANC) and the Section of Neuro-oncology of the Latin American Federation of Neurosurgical

Above: Some of the participants and organisers at the 2014 Argentinian Brain Tumour Awareness Day: Dr Máximo Barros, Dr Carolina Barciocco, Dr Sergio Daniele, Dr Alejandra T Rabadán, Dr Ana Martínez, and Dr Alfonso Durand

Societies (FLANC) also gave their academic support to the meeting. The 2014 “Brain Tumour Awareness Day”

focused on “The accessibility of patients to diagnostic methods and treatment”. Many experts from different disciplines - neurosurgery, neuro-oncology, pathology, radiation therapies and radiosurgery, palliative care and psycho-oncology attended the meeting. The experts shared their experiences with the audience and put forward proposals to improve the management of brain and CNS tumours in Argentina. Through these efforts, we hope to continue to improve education and the use of specialized resources with the ultimate goal of providing an equitable neurosurgery service, with enhanced research and training, for the benefit of the Argentinian people. n Brain Tumour

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Central nervous system tumours in children and young people... an overview and invitation to ISPNO 2016, Liverpool Professor Barry Pizer, Consultant Paediatric Oncologist Alder Hey Children’s NHS Foundation Trust, Liverpool, UK

CENTRAL nervous system (CNS) tumours in children and young people are rare. They are, however, responsible for more deaths in children than any other tumour group and overall are a major cause of death in childhood. Importantly, survivors of childhood brain tumours have a high risk of severe and often devastating late side effects of treatment. Multiple problems are faced by clinicians and scientists in achieving the dual aims of improving survival whilst minimising the side effects of treatment. These include the extreme sensitivity of the developing brain to therapy, the relative resistance of some tumour types to both chemotherapy and radiotherapy (as compared to leukaemia and several non-CNS paediatric cancers) and the so-called blood brain barrier - the unique blood vessels in the brain that limit the delivery of drugs into the brain.

Research is moving forward Advances in treatment are moved forward in clinical trials undertaken by national and international brain tumour groups, most notably those under the auspices of the North American Children’s Oncology Group (COG) and the International Society of Paediatric Oncology (SIOP)-Europe. In addition, national groups from Japan, Australasia and others have made a contribution to the global clinical trials portfolio. Such groups conduct both early (Phase I and II – drug development) and late (Phase III and IV – introduction to standard treatment) trials in the major brain tumour types seen in children and young people. 66

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Above: Professor Barry Pizer says: “Of great

long way to define the molecular basis of tumour development and progression. A range of technological advances has underpinned genetic based research, most notably our recent ability to determine the whole genetic sequence of tumour cells. Such research has clearly shown that individual tumour types cannot be considered a single disease but are comprised of a number of molecularly distinct sub-types with different outcomes that thus demand different treatment considerations and approaches to a relevant clinical trial. Within each sub-type we can further stratify patients into even more precise prognostic groups.

encouragement in the fight against CNS tumours in advances in our understanding of tumour biology.”

Some examples of sub-types in paediatric brain tumours

The rarity of children’s brain tumours and the need to sub-divide tumours with respect to the child’s age, metastatic status and - increasingly - histology and biology limits the number of patients available for an individual trial. Certainly in Europe this factor makes international collaboration essential in order to conduct clinical studies. For very rare tumour subtypes a global approach is necessary in order to undertake relevant trials. Of great encouragement in the fight against CNS tumours in childhood and adolescence are the recent amazing advances in our understanding of tumour biology. Indeed, laboratory based research in paediatric neuro-oncology is now at the forefront of cancer research. Several world-leading research facilities are dedicated to the understanding of brain tumours and these have gone a very

The prime example of this new knowledge is in medulloblastoma, the most frequent malignant CNS tumour in childhood. In 2012, Professor Mike Taylor from SickKids Hospital in Toronto, Canada led an international group of experts who defined the currently accepted classification of medulloblastoma into four distinct sub-groups based on current understanding of biology linked to clinical data. This and other initiatives highlight the truly global approach to basic science and translational approaches to enhance knowledge and improve outcome. These advances are not limited to medulloblastoma. In every tumour, genetic differences have been demonstrated with prognostic and thus therapeutic implications. For example, an international collaboration has recently demonstrated that probing alterations in tumour DNA is

childhood and adolescence are the recent amazing


able to define a so-called CIMP-positive subtype of posterior fossa ependymoma, another very intransigent pediatric brain tumour in young children who have a clearly poorer outcome than CIMP-negative tumours. Similar genetic sub-typing has been demonstrated in high grade glioma, diffuse intrinsic pontine glioma, atypical teratoid/rhabdoid tumour and other tumour types. We are now directly applying this new knowledge to clinical trials. For example, Group 1 medulloblastoma is characterised

by activation of the WNT pathway and appears to have a very good prognosis. This distinct subgroup is being specifically examined in the recently opened SIOPEurope PNET 5 trial and a planned COG study. Both have the aim of reducing the burden of treatment, particularly the dose of radiotherapy to the whole brain.

Better treatments, better outcomes It is perfectly conceivable that in the near future whole genome profiling will be undertaken on every patient with

OUR knowledge of scientific discoveries is presented at congresses that facilitate the dissemination of new and unpublished data and global networking between investigators. The International Symposium on Pediatric Neuro-Oncology (ISPNO) is the world’s premier conference in this specialty. Initiated by Professor Roger Packer (a world leader in paediatric neuro-oncology) with the first meeting in 1986, ISPNO is held every two years and is a focal point for all those involved in the battle against CNS tumours in children and young people. I would very much like to welcome you to the 17th and next ISPNO conference to be held in the incredible city of Liverpool, UK from 12th to 15th June 2016. We are very proud of our city as a centre of research and learning with a proven track record of hosting major national and international congresses. The venue for the conference is the award winning Liverpool Convention Centre located in a delightful waterfront setting that has achieved world heritage status. In addition to a full programme covering all the main aspects of paediatric neuro-oncology, we plan to host a dedicated neurosurgery day, an education day and a neurooncology nurses meeting. The congress will include keynote lectures from world-leading speakers and a number of lively debates on key areas of this speciality as well as excellent networking opportunities and a vibrant social environment. Delegates, sponsors and exhibitors will have the opportunity to visit a memorable and exciting city with a rich architectural, maritime, art and musical heritage – one of the most visited cities in the United Kingdom. We promise you a most stimulating and exciting meeting and look forward to welcoming you to Liverpool next year. n

medulloblastoma and probably other tumour types. This new biology also opens up clear and exciting treatment approaches that are designed to directly target the molecular pathways responsible for tumour development and proliferation. Inhibitors of a particular pathway, Sonic Hedgehog (SHH), are currently being investigated in the treatment of Group 2 (SHH) medulloblastoma, and drugs called BRAF inhibitors are showing promise in the control of low grade glioma. n

Above: The ISPNO 2016 conference will be held at the award-winning Liverpool Convention Centre

We welcome you to the 17th International Symposium on Pediatric Neuro-Oncology (ISPNO) conference to be held in the historic city of Liverpool, UK June 2016. ISPNO is the major biennial global meeting of the international community of professionals involved in the research, diagnosis, treatment and rehabilitation of children and young people with brain tumours.

The venue for the conference is the award winning Liverpool Convention Centre set on a delightful waterfront that has achieved world heritage status. The meeting will be of interest to all those involved in caring for children and young people with CNS tumours.

www.ispno2016.com We look forward to seeing you in Liverpool in 2016 Tel: +44 (0) 151 558 0964 Email: cs@happen.co.uk

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New study identifies first gene associated with familial glioma Dr Melissa Bondy, Associate Director for Cancer Prevention and Population Sciences Dan L. Duncan Cancer Center and Professor, Department of Pediatrics Dan L. Duncan Endowed Professor and McNair Scholar, Baylor College of Medicine Houston, Texas, USA

AN international consortium of researchers led by Baylor College of Medicine (USA) has identified for the first time a gene associated with familial glioma (brain tumors that appear in two or more members of the same family) providing new support that certain people may be genetically predisposed to the disease. “It is widely thought amongst the clinical community that there is no association between family history and development of glioma. Because we know very little about the contributing genetic factors, when cases occur in two or more family members, it is viewed as coincidental,” said Dr. Melissa Bondy, associate director of cancer prevention and population sciences at the NCI-designated Dan L. Duncan Cancer Center and lead and corresponding author of the report that appeared in the Journal of the National Cancer Institute (see sidebar for a link). Dr Bondy added: “By understanding more about the genetic link, we hope that one day we can improve treatments and preventive strategies for those with a family history of glioma.” Bondy estimates that approximately five percent of brain tumors run in families. The study was conducted through the Gliogene Consortium, a collaborative group of familial brain tumor researchers from around the world, which is primarily supported with funding from the US National Cancer Institute (NCI). “I have been researching familial glioma for nearly 30 years, and this study is really the first time we have had a hit when it comes to identifying a gene that is potentially associated with 68

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Above: Dr Melissa Bondy, lead and corresponding author of a study into familial glioma

predisposition to the disease,” said Bondy, principal investigator of the Gliogene Consortium. The Gliogene Consortium recruited 435 families in which glioma occurred from 14 centers in the United States, Sweden, Denmark, the United Kingdom and Israel. The recruitment occurred between 2007 and 2011 while Bondy was on the faculty at the University of Texas MD Anderson Cancer Center. She joined the Baylor faculty in September 2011. Once at Baylor, Bondy collaborated with experts in the college’s Human Genome Sequencing Center to advance research of the genetics of the disease. The team applied an advanced method of genetic testing called whole exome sequencing (which determines the DNA sequence of the exons, or protein-coding regions, of tens of thousands of genes simultaneously) on 90 individuals with

glioma from 55 families enrolled in the Gliogene project. Dr. Matthew Bainbridge, post-doctoral associate in the Human Genome Sequencing Center at Baylor and first author on the report, combed through the sequencing data and identified mutations in a gene called POT1, which was present in two of the families. In one family, six members harbored a mutation of POT1 that is rarely seen in other populations, and among them three developed glioma. In another family, six individuals carried a different mutation in the POT1 gene and two developed glioma. They further validated the finding in a separate group of individuals and families with glioma in which they identified an additional mutation in POT1 in one family. “We are just learning about the risk of cancer associated with POT1 mutations. Some of the other family members who carry the mutation may develop brain tumors later in life,” said Bondy. “These members were younger than the ones who developed the disease.” The mutations in the POT1 gene are predicted to result in a disruption in a region of the POT1 protein that is important for its function at telomeres, the protective caps at the end of chromosomes. “POT1 modulates the activity of telomerase, a highly regulated enzyme that lengthens telomeres,” said Bondy. “This is a very important process, and when the process is disrupted with a mutation in a gene like POT1, the telomeres elongate.” Although short telomeres have been implicated in a wide range of cancers,


longer telomeres have previously been associated with some cancers as well, Bondy and Bainbridge noted. POT1 also has recently been observed in familial melanoma in association with longer telomeres by another research team, which is not at all surprising to Bondy, as she has previously reported a higher incidence of melanoma in first degree relatives of glioma patients than expected. In the Gliogene study, the mutations were associated with oligodendroglioma, a lower grade glioma, which is more sensitive to radiation therapy. “We will do additional research to see how frequent the mutation is in familial gliomas and if it is also associated with higher grades of the disease,” said Bondy. “As we learn more about POT1 and familial glioma, it may help us in counseling families about glioma risk or possibly point the way to new therapeutic targets,” said Dr. Sharon Plon, a co-author on the study who is a medical geneticist at Baylor. “This is the beginning of defining the genes for familial glioma.” Bondy and her team suspect there could be a number of other genes associated with familial glioma. n

The Gliogene Consortium is still actively recruiting patients and their family members to be included in future research. For more information on how to participate, contact Georgina Armstrong at georgina@ bcm.edu or 713-798-2951. To read the report that appeared in the Journal of the National Cancer Institute see http://jnci.oxfordjournals.org/

The 2015 International Brain Tumour Awareness Week is from 25th to 31st October.

Collaborators on this study included researchers from Yale University School of Medicine, New Haven, Connecticut; Brigham and Women's Hospital, Boston, Massachusetts; Case Western Reserve University School of Medicine, Cleveland, Ohio; Georgia State University School of Public Health, Atlanta, Georgia; Duke University Medical Center, Durham, North Carolina; Gertner Institute, Chaim Sheba Medical Center, Tel Hashomer; Sackler School of Medicine, Tel-Aviv University, Tel-Aviv, Israel; Danish Cancer Society, Copenhagen, Denmark; Institute of Cancer Research, Sutton, Surrey, United Kingdom; Mayo Clinic in Rochester, Minnesota; Memorial Sloan-Kettering Cancer Center in New York, New York; North Shore University Health System in Evanston, Illinois; University of California in San Francisco; University of Alberta in Edmonton, Alberta, Canada; The University of Southern California Keck School of Medicine in Los Angeles; The University of Texas M.D. Anderson Cancer Center; Geisel School of Medicine at Dartmouth in Hanover, New Hampshire; The University of Arizona Cancer Center in Tucson and the Umeå University in Umeå, Sweden. Funding support for this study was provided by National Institutes of Health (R01CA119215, R01CA070917, R01CA52689, P50097257, R01CA126831, U54HG003273, P30CA125123, K23CA158148); the McNair Medical Institute; the Population Sciences Biorespository at Baylor College of Medicine; the American Brain Tumor Association; the St. Baldrick’s Foundation and The National Brain Tumor Society.

The more we can get people talking about brain tumours, the more understanding there is for patients and their families BRAIN Tumour Ireland is extremely grateful to all who supported our Run/ Walk/ Buggy Push event in Corkagh Park, Dublin, on Sunday 12th October 2014. Participants took part in the 10k and 5k timed runs, as well as the 5k family fun walk. There was lots of fun entertainment there for kids with Peppa Pig even making an appearance! This event helped raise vital funds for the work of Brain Tumour Ireland in supporting patients and their families. This year for example we have held a series of Wellness Days for patients, a Carers’ Information Day and, more recently, a special non-denominational service for all those who have lost someone to a brain tumour. Crucially the Run/Walk/Buggy Push is also an important exercise in raising awareness about brain tumours in Ireland. That is why we are delighted to

10K/5K RUN 5K FAMILY WALK / BUGGY PUSH! When: Sunday, Where: Corkagh

12th October 2014 Park, Clondalkin, Dublin 22

Start time: 11am Meet: Car park at St. John’s Grove entrance off Fonthill Road South (main entrance to Corkagh Park)

Sign in and t-shirt pick up: 9.30 – 10.15am Register at www.precisiontiming.net (click Race Calendar) 10K timed run €25/ 5K timed run €15/ 5K untimed run & walk €10 Free t-shirt for 5K untimed runners & walkers. Free technical race t-shirt

attached) for“Walk 10k & 5k timed runners be part(with oftiming thechipIBTA’s Around the World” project.Bag/KeyFacilities: drop off point Toilets Parkingget people The more we can www.braintumourireland.com talking about brain tumours, the more understanding there is for patients and their families. The event itself, and the resulting media coverage, was really important in helping to raise awareness of our services and support. n

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My war against glioblastoma Laura D’Avanzo Sardinia, Italy I want to tell you a story. It is a true story, but unfortunately no fairy tale. It starts with the word “glioblastoma” – a word that changes your life forever. This story begins in 1978 when my 12 year-old brother Andrea started having strange symptoms. His eyesight declined, he started to get severe headaches and fainting fits. Doctors diagnosed a fatal brain tumour and a six-year nightmare began with endless trips to hospitals, travel to Holland in the hope of finding more help and many tears and much pain. Despite the disease he never lost his smile and he continued to worry about us. I was very young and I lived with my brother’s disease without ever being able to talk to him about it. It was just a bad dream, and it was as though talking about it would make the disease even more real and tragic. It was a huge pain that I still carry inside me. Sadly Andrea lost his battle with his brain tumour at the age of 18. This should be enough suffering for one family. But 26 years later my father was diagnosed with glioblastoma multiforme (GBM) and given just six months to live. He survived for 13 months but died in May 2010. During his illness I learned that my grandmother had died of the same disease. She too lived only a few months. I never knew her. Then just eight months later glioblastoma struck one of my aunts, Maria. She died in February 2012.

active part in The Group. As a result Simone and I organised a meeting of The Group in Sardinia , sponsored by the city of Stintino, where I lived . Our meeting attracted coverage by a Sardinian daily newspaper and a local television station and this led to more events and conferences.

Proud to carry on this work

Above: Laura D’Avanzo and her father on his last birthday

cervello” group (The Group). The Group was founded in 2009 by Simone Silenzi, whose mother had died as a result of the disease. I can still remember when I talked to a doctor about The Group when my father died. His response was immediate and bad and left me speechless because he told me to let go of this nonsense and that it could only hurt me more. However, far from putting me off, it made me determined to do more and to take an

I’m very proud to be able to act beside Simone who devotes every moment of his life to The Group with the sole purpose of getting action on glioblastoma. We don’t raise funds and we have to meet the costs of our meetings with members from our own financial resources. We have some help from other associations. The Group is like a large family united by the same pain or the same experience. We now have more than 170 discussion topics ranging from our experiences with standard and alternative treatments to nutrition. Recently we have set up two new sessions looking at the effects of glioblastoma on children and investigating the link between glioblastoma and heredity. This last topic concerns me but as yet we don’t have any answers and

Turning darkness into light As a result of all this pain and anger and the helplessness I felt for not being able to save my loved ones, came my determination to do something for all those people affected by this horribly evil disease, which devours the lives of its victims and their families. A friend told me about the “Italia Glioblastoma Multiforme - cancro al 70

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Above: Laura (far right) with her Aunt Maria (second from left) and other relatives


For more information on “Italia Glioblastoma Multiforme - cancro al cervello” please visit www.facebook. com/groups/italia.glioblastoma. multiforme or contact iosim@hotmail.it

that is one reason for my work continuing. It is thanks to The Group, which now has more than 4,000 members - including patients, their families, caregivers and health workers - that I can channel some of my anger and pain. As a result of my journey I’m stronger and I know that the memory of my loved ones will remain forever to remind me that there is still so much to do. We must always fight on so that no one else has to feel alone in the fight against glioblastoma. n

Above: Laura’s brother, Andrea, in hospital

The Astro Brain Tumour Fund Norfolk (UK) Family Walk 2014 CHRISTINE Forecast of the Astro Brain Tumour Fund reported that the Eighth Norfolk Family Walk for brain tumour research and support once again took place in the grounds of the palatial Holkham Hall, Wells-next-the-Sea, Norfolk, UK on Sunday, 19th October 2014. There were walks of one, three, six or ten miles long. The one-mile walk for children had games along the way. The weather was very kind and the sun shone on a record number of around 400 adults and children plus lots of four-legged friends, who enjoyed the walk around the park, taking in the beautiful surroundings. The ten-mile walkers also enjoyed the facilities of Wells-next-the-Sea, namely fish and chips, a pint or a cup of coffee! When they returned to base, most of the walkers then took the opportunity to recuperate at the excellent café at the Hall, enjoying the lovely autumn sunshine. 2,039 miles walked by those who reported back to the finish tent were “donated” to the IBTA’s Walk Around the World for Brain Tumours. Very importantly, in excess of £7,500 for brain tumour research and support was raised. It was a happy and uplifting day with lots of people taking the opportunity to catch up with friends and family.

Above: Happy walkers at the finish line of the Astro Brain Tumour Fund’s annual 2014 Norfolk Family Walk at Holkham Hall

Above: Autumn walking on a sunny October day in the UK

For more information about the Astro Brain Tumour Fund see www.astrofund.org.uk n

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Trials and tribulations: when patients with relapsed glioblastoma may consider taking part in clinical trials Dr Rhoda Molife, Medical Oncologist and Principal Investigator in Phase I Trials, The Royal Marsden Hospital, Sutton, United Kingdom Why haven’t brain tumour patients generally been included in Phase 1 trials?

ALL patients with advanced cancer eventually exhaust available treatments; for some cancers there may be no effective treatments at all from the outset. At this point, palliative care becomes a priority and is aimed at controlling any cancer related symptoms. However, for some patients, alongside palliative care, this may be an opportunity to take part in Phase I clinical trials.

Historically, patients with relapsed glioblastoma and other primary brain tumours were generally not included in Phase I studies for a variety of reasons:

What are Phase 1 trials? Phase I trials in oncology are experimental trials where drugs are being tested for the first time in cancer patients. The aim is to find out how safe a drug, or a new combination of drugs is, what the highest safest dose is, how the body breaks down the drugs, and how cancer cells are affected. Because of the highly experimental nature of these trials they are best suited to patients who are fit enough to be able to perform light work and are self caring, with good blood tests, no other serious illnesses, on few other medications, and able to attend weekly hospital visits for repeated tests, which involve some overnight stays. The entry criteria for Phase I trials can appear inflexible, but when testing new drugs, it is important to ensure the safety of patients taking part. Because we have no information on how the human body handles untested drugs, there is always a risk of unexpected and potentially serious side effects. We know that this risk is higher in patients who are less well. In addition, any interaction with other drugs and other 72

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It was felt that patients with brain tumours were less fit than patients with other cancers. n Patients with brain tumours were more at risk of bleeding into the brain. n The neurological symptoms, particularly if unstable, would make it difficult to tease out side effects, especially those that are unexpected. n Often patients with brain tumours would be on steroids or anti-epileptic drugs which can interact with many other drugs; this would raise safety concerns when testing a new drug. n Most drugs are designed not to cross into the brain. n

Above: Dr Rhoda Molife, a medical oncologist, has published more than 50 original articles and book chapters in peer reviewed journals and publications, as well as presented at national and international oncology meetings.

serious illnesses with their own symptoms can make it difficult to say how safe a drug really is. As a drug is being tested for the first time in humans in a Phase I trial, we do not know how effective it will be at controlling cancer. Scans are however used at regular intervals to find out if the experimental drug may be slowing the growth of a patient's cancer. As we do not know how effective a drug is at this stage, most patients do not benefit directly from taking part in these trials. What we all benefit from though, is the knowledge we obtain that helps us develop these drugs into treatments of the future.

However, in recent years, as we recognise the importance of finding new and effective treatments for these difficultto-treat cancers, there has been renewed interest in opening more Phase I trials that allow entry for patients with glioblastoma. Many of the arguments against including patients with relapsed glioblastoma no longer apply as: Many patients who have relapsed glioblastoma are young and fit with no or few other medical problems. Small studies have shown that these patients tolerate Phase I trials as well as patients

n


with other types of cancer. n There is no evidence that patients with brain tumours have a higher chance of bleeding into the brain. n Anti-epileptic drugs are not routinely given to patients with glioblastoma now, unless they have experienced fits. n As we move into the era of targeted treatments, we are now finding that many of the proteins that are hit by these new treatments span different types of cancers including glioblastoma. There is no reason for glioblastoma patients to be excluded from this treatment progress. n Many drugs now do cross into the brain. There are several hospitals around the UK that run Phase I trials. Some may have trials that allow entry for patients with glioblastoma. This will depend on the kind of trials running which varies widely as trials open and close continuously.

What you can expect If your oncologist no longer has standard

licensed treatments to give you, you may both consider a Phase I Trials Unit near you. If there are potential trials, you would be sent an appointment where at the first visit, the Phase I doctors and nurses usually explain how the trials work and whether this would be the right option for you. This would be based on your previous treatments, medical history, fitness and blood results. Most Phase I Units have several trials running, so it is only after this assessment that details of a specific trial can be given to you. If a suitable trial is recommended, patients would then need to pass a general health check using blood and urine tests, ECGs (heart tracings), scans and other special tests such as echocardiograms (heart scan), and eye and lung tests to make sure it is safe to proceed. Phase I trials may be time consuming for patients. However, all the information is vital as it helps enormously in developing drugs that may go on to become effective treatments in the future. In this way they offer a great deal of hope for us all. n

BACK to school! Kathy Oliver (IBTA Chair and Co-Director) with her fellow trainees and the trainers for the EUPATI programme (European Patients’ Academy on Therapeutic Innovation). The EUPATI Expert Training Course is a unique opportunity offering patients and patient advocates expert-level training in medicines research and development. The course is a mixture of independent e-learning coursework and face-to-face training events over a 14-month period. See http://www. patientsacademy.eu/index.php/en/ n

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Changing attitudes - an interview with Professor Dr Christine Marosi Christine Marosi is a Professor in the Department of Oncology at the Medical University of Vienna in Austria. Her specialist research focus includes central nervous system tumours, genetic changes in tumours and gender and oncology. She has a particular interest in the provision of early palliative care for brain tumour patients. Professor Marosi is also a Board member of the European Association of Neuro-Oncology and Managing Editor of the World Federation of Neuro-Oncology Magazine (formerly the EANO magazine).

IBTA: Where did you spend your childhood? Christine Marosi (CM): I spent my childhood in Germany and Austria. Being brought up speaking German and French, I still use this as an excuse for my insufficient fluency in English.

The lab is still used in Vienna. Then, I became more and more involved in clinical studies and looked for a field in oncology that was not already taken by my male colleagues. I was at this time the only female ‘Oberarzt’ (senior doctor) in my department - and neurooncology and head and neck tumours were the only free fields. So in 1994, I chose neurooncology because of my interest in neurology and the fact that several neurosurgery classmates were also interested in this field.

IBTA: Did you come from a family environment that had a connection with medicine or research? CM: There were several researchers in my family, but none in medicine. My father was a physicist doing research all his life (for high power electric networks), as well as several ancestors working in plant physiology or meteorology and geodynamics. Above: Christine Marosi is particularly interested

IBTA: What attracted you to medicine and later to the brain tumour area? CM: When I was about three my maternal grandmother fell ill with non-Hodgkin’s lymphoma. This disease has been frequent in our family with more than 15 cases in four generations. My mother moved back home to help her mother and we stayed there until my grandmother died. After this, I never doubted that I should dedicate my life to the alleviation of suffering and worked hard to go to medical school and to become a doctor. During my studies, I had a very different approach to the field; I wanted to work in genetic counselling in order to avoid familial cancer syndromes. When I finished my medical studies in 1979, there were no opportunities in this area. This is an extremely sensitive subject due to the Nazi euthanasia crimes. But, as a student, I had worked for six months in a unit for genetic counselling at the University in Dijon, France and my colleagues there recommended me to a cytogenetic laboratory at the Medical 74

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in the provision of early palliative care for brain tumour patients.

University in Vienna. So, I started learning to karyotype leukaemias and later lymphomas. A karyotype is a picture of a person's chromosomes. The chromosomes are isolated, stained, and examined under the microscope. Using the microscope, a photograph is taken and that photograph can then be cut up and the chromosomes re-arranged so we can find any missing or extra pieces. When I came to the medical oncology ward, I realised that this was “where I belonged”. I was so lucky to do one year of research in the tumour cytogenetic research unit under Prof Dr Anne Hagemeijer, a charismatic leader in the field, at the Erasmus University in Rotterdam. She taught me how to do research. When I came back, I built a tumour cytogenetic lab at my unit in Vienna, rapidly including the analysis of solid tumours and working clinically with patients on the ward.

IBTA: You have a particular interest in palliative care. What do you think are the two main challenges of delivering optimal palliative care to brain tumour patients? CM: I am attracted by the soft skills in care which might help patients and their families cope better. I think the two main challenges of introducing early palliative care for brain tumour patients are: n Lack of resources and adequate personnel for palliative care in Austria n The wrong image of palliative care as nihilistic end-of-life care that persists in our country as well in the mind of physicians, nurses, patients and families. In the past few years there have been some initiatives to change this. We had the opportunity to publish a translation of an article on palliative care by Kathy Oliver, Chair of the International Brain Tumour Alliance (IBTA) in the patient journal of our hospital and all institutions involved in palliative care joined in this effort.* But there is still a long way to go. IBTA: Do you think that palliative care should be introduced early on in a patient’s journey and if so, why or why not?


CM: Yes indeed. We are currently doing a “Temel-type� (see http://www.nejm.org/doi/pdf/10.1056/ NEJMoa1000678) study for brain tumour patients. We have randomised them to either: n receive regular visits with a palliative care specialist from the time of diagnosis n receive standard care and get palliative care consultations as soon as the patient or the family asks for them Quality of life and stress levels are assessed in all groups every three months. It was not an easy task to formulate the informed consent sheet for this study. But the study has now started and we have randomized a third of the intended patient numbers. IBTA: Sometimes palliative care is a misunderstood field with many people confusing the term with end-of-life (EOL) care only. EOL care is part of palliative care but how would you describe what palliative care is to a newly diagnosed brain tumour patient and his family? CM: I explain to the patient and family how I understand the concept of integrating

ImageanzeigeNeurochirurgie.indd 1

palliative care which is that having a team of professionals with different specializations is better than having only a team with one speciality. Moreover focussing on symptom management and on coping is extremely beneficial to patients and families. IBTA: How do you cope with the emotional and psychological challenges to you personally arising from your work? CM: I am still strongly interested in my field of research and patient care, and become more and more intolerant of the administrative burden. This has grown ten-fold in the last few years and I doubt that this effort is worth it. IBTA: Do you anticipate any significant breakthrough in brain tumour therapies in the next ten years? If so, in what area? CM: My expectations are on immunological therapies and the use of challenging metabolic differences between tumour cells and normal cells. I do not understand why most studies still look for a magic bullet that could cure all glioblastomas (GBM). We do know that GBM is extremely diverse and genetically unstable, more than other tumours. Why do we not look

more for subgroups? Fortunately, this has already started and I hope that the studies using vaccination against EGFR will be positive. The rationale to target a tumour-specific protein that drives cell division of the tumour and is not expressed in normal cells is so convincing. There is also another study targeting mutated IDH1 which is promising. Hopefully more such concepts will emerge. IBTA: How do you relax? Do you play music, go for walks, sail a boat? Do you have a hobby? CM: All of that except sailing. Reading French literature has always relaxed me the most effectively, but I also like gardening and spending time with the family. I very much enjoy cooking regularly for at least six people growing up in a family with four daughters. n

*Kathy Oliver’s article on palliative care appears in this magazine and is reprinted with kind permission of the original publishers.

20.03.2014 13:44:56

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Demystifying Palliative Care Kathy Oliver, Chair and Co-Director, International Brain Tumour Alliance and Patient Issues Section Editor, European Association of NeuroOncology Magazine ACCORDING to the New England Journal of Medicine, palliative care has “an identity problem”. (1) If you ask the man in the street about it, he will most likely say: “It means you’re dying.” An article in the US National Pain Report (sponsored by the National Pain Foundation), talks about it as part of a “conspiracy of silence”. (2) A 2011 national survey of 800 adults in the United States found that 70% were “not at all knowledgeable” about it. (3) And when palliative care is mentioned to them, the first reaction of many people with a life-threatening illness is often one of fear, because it is associated in their minds with the end of life.

Palliative care: perceptions are confused Public awareness of palliative care - what it is and where and when it should be optimally provided - is, at best, confused. The WHO definition explains that palliative care “…is an approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” (4) In the survey mentioned above, palliative care is further defined as “…specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain and stress of a serious illness – whatever the diagnosis…Palliative care is appropriate at any age and at any stage in a serious illness, and can be 76

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provided together with curative treatment.” (5) Yet the popular belief is often that palliative care is singularly associated with death and dying. While palliative care certainly plays a critically important role at the end of life, good palliative care is also very relevant to many earlier stages of a disease trajectory, often a considerable time before death is approaching. The understanding of palliative care amongst healthcare professionals also seems confused. Some physicians asked about the definition of palliative care in connection with the US survey responded: “[Palliative care is] comfort care during one’s last few weeks of life to allow patients to pass in comfort and dignity.” “Palliative care is helping families to give them comfort and options for what to do at their loved one’s end of life.”

Palliative care for the whole brain tumour journey In reality, palliative care is not just for people who are dying. Effective antiepilepsy medication for brain tumour patients with seizures, for example, is palliative care. Help in coping with fatigue is palliative care. Psychological support to combat anxiety and depression is palliative care. Spiritual and existential counseling are facets of palliative care. For people diagnosed with brain tumours, high quality, early palliative care is essential. High grade brain tumours, in particular, can cause significant morbidity. Patients can experience severe headache, nausea, vomiting, intense fatigue and seizure activity. Additionally, patients may suffer from aphasia, impaired vision and hearing, hemiparesis, and mood/personality and cognitive deficits. The needs of patients with brain tumours (particularly glioblastomas - GBMs) are complex and require a multi-disciplinary approach. Yet, as identified by Lin et al in their paper on Neuro Oncology and palliative care: a challenging

interface, few multidisciplinary teams routinely include in their core group palliative care members. (6) The paper goes on to argue that “Palliative care teams bring complementary expertise in symptom management, communication skills and practical physical and psychosocial support, both within and outside the hospital environment. With the known consequences of GBM diagnosis, it follows that palliative care should and must become an integrated standard part of best practice neuro-oncologic care…Given the demonstrated benefits of early palliative care integration with anticancer therapies in other cancer diagnoses, the time for robust investigation into palliative care for patients with GBM is now.” Indeed, several randomized studies very much support the notion that the sooner palliative care is provided to cancer patients, the better this difficult journey becomes for them. Early palliative care intervention can have a very positive impact, resulting in better symptom control and thus significantly improved quality of life. One study involved 151 metastatic nonsmall-cell-lung cancer patients randomized to receive early palliative care with standard oncological care or standard oncological care alone. The study found that the patients who received early palliative care reported a better quality of life and survived more than two months longer on average than the patients in the standard oncological care only arm of the study (11.6 months versus 8.9 months) even though the patients in the early palliative care arm received less aggressive end-of-life care. (7)

Debunking myths and misperceptions But what about the need to demystify palliative care, to make it more understandable to patients and their families so that the mention of it doesn’t instill confusion and fear? And how can we dispel the popularly-held myth that palliative care only means end-of-life care?


Good, clear communication is paramount. It is important that the professional palliative care community ensures that their messages to patients and caregivers about this crucial aspect of the cancer journey are not disparate but rather that they are consistent across the field. A good example of promoting clarity and consistency in the way palliative care is described is the online glossary of palliative care terms produced by the Palliative Care Programme Working Group of the Irish Health Service Executive (HSE). (8) Additionally, palliative care specialists should be given every opportunity to have a much more open and frank dialogue with stakeholders - from patients, families, caregivers and healthcare providers to the media, general public and politicians. Pragmatic suggestions as to how this can be achieved include easy-tounderstand, general purpose leaflets on how palliative care is practiced; specific instructions on how patients can make contact with palliative care specialists and discuss their needs; and media campaigns in the national press. It’s also vital that the added value aspects of early intervention palliative care are brought to the attention of key opinion leaders and politicians so that they can support better understanding of the service and promote its importance in terms of prioritizing healthcare expenditure. Auditing the effects of palliative care is also important. Systems to obtain feedback from patients about the palliative care they are receiving, and its outcomes, as well as seeking the opinions of family, friends and caregivers would be useful. Of course, pro-active steps like these require both human and financial resources and lack of these is recognized as a barrier which also needs to be addressed.

An important role for brain tumour patient organisations Brain tumour patient organisations and charities can play a key role in changing attitudes towards palliative care. An important strategy for improving public awareness about palliative care is providing education and publicity - two areas in which many patient organisations have much experience and know-how which they can use to help achieve a better understanding of what palliative care means and the advantages which early intervention can bring. Brain tumour patient organisations also have extensive networks through which to spread information about the benefits of early palliative care. The palliative care team might even involve representatives from patient organisations who can provide support and information about, for example, social workers and counsellors or religious and spiritual care workers. Finally, in order to demystify palliative care so it is better understood and better integrated into standard oncological practice, do we need to take radical steps? There seems to be increasing confusion about the use of palliative care terminology. It is important to be consistent and clear. Should we accept the suggestions from some that the descriptor “palliative care” should be jettisoned and replaced with a term like “supportive care” or “comfort care” or “quality of life care” thus moving away from the widespread belief that palliative care equates only to hospice and end of life care? Whatever you call it, we need to be much more open in our discussions about palliative care. People need to understand that palliative care is not an approach only associated

with dying - nor that the timing of its implementation for individual patients means that all hope has been abandoned. n Notes: 1.Parikh RB, Kirch RA, Smith TJ, Temel JS, Early Specialty Palliative Care – Translating Data in Oncology into Practice, N Engl J Med 2013: 369-2347|December 12, 2013|DOI: 10.1056/ NEJMsb1305469 2. Fleischman S, Palliative Care: Not just for the Dying, National Pain Foundation, 4 November 2013, http://www. thenationalpainfoundation.org/pain-news.php [accessed online 3 July 2014] 3. Center to Advance Palliative Care, 2011 Public Opinion Research on Palliative Care: A Report Based on Research by Public Opinion Strategies, http://www.capc.org/toolsfor-palliative-care-programs/marketing/public-opinionresearch/2011-public-opinion-research-on-palliative-care.pdf [accessed online 4 July 2014] 4. World Health Organization (WHO) definition of palliative care, http://www.who.int/cancer/palliative/definition/en/ [accessed online 3 July 2014] 5. Center to Advance Palliative Care, op cit. 6.Lin E, Rosenthal MA, Le BH, Eastman P, Neuro-Oncology and Palliative Care: a Challenging Interface, Neuro Oncol, Sep 2012 (Suppl4): iv3-iv7|DOI 10.1093/neuron/nos209 7. Temel J, Greer J, Muzikansky A, et al, Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer, N Engl J Med 2010:363:733-42 8. Health Service Executive, HSE (Ireland), Glossary of Terms, Palliative Care Programme, Clinical Strategy and Programmes Directorate, http://www.hse.ie/eng/about/Who/clinical/ natclinprog/palliativecareprogramme/glossary.pdf [accessed online 5 July 2014]

Reprinted with kind permission of Krause & Pachernegg GmbH, Austria: EUR ASSOC NEUROONCOL MAG 2014; 4 (3) 127-128. To view the entire, free-access EANO magazine, please visit http://www.kup.at/journals/ inhalt/1650.html

During the year, the National Brain Tumor Society hosts 16 Walks across the country. As with all these events, everyone comes together to support one another, build awareness, and raise critical funds for the cause. Incredible teams join to honor and celebrate their loved ones, whether living with a brain tumor or having passed, in this powerful day of community. n

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TM

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 •

The ABTA CommYOUnity™ is a growing volunteer network of patients, caregivers and health care professionals dedicated to serving the brain tumor population and cause.

To learn more, visit www.abta.org

Gives information for brain tumour patients to assist making treatment decisions Supports research for the development of more • effective therapies •

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 2015 advert_Layout 1 09/04/2015 16:40 Page 1

When you are diagnosed with a brain tumour, you need someone who understands. We know. Charity No. 113356

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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.

A small charity can make a big difference. We know.

Get in touch today, for 24/7 help on 01983 292 405, email hello@brainstrust.org.uk or visit www.brainstrust.org.uk brainstrust is a registered charity in England and Wales (1114634), and Scotland (SC044642)

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Astro Brain Tumour Fund is working hard to end the anguish for those living with this devastating form of cancer by funding research throughout the UK. It also provides support to low-grade brain tumour patients and their families via two international online support groups and a closed Facebook page.

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

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International Brain Tumour Awareness Week activities in Bucaramanga - Colombia holds its brain tumour symposium Gabriel Vargas, MD, Neurosurgeon, President of the Neurosurgical Oncology Section of the Latin American Federation of Neurosurgical Societies (FLANC) and Lead Coordinator of the 4th Symposium FOR the fourth year running we supported the International Brain Tumour Awareness Week 2014 with three activities. 1. Neurosurgery research group students from the Universidad de Santander (UDES), participated in the 10th City of Bucaramanga Marathon, while promoting the 4th International Brain Tumor Awareness Day Symposium. 2. We organised a pre-symposium course at the systems engineering lab at UDES. This dealt with strategies in oncological neurosurgery. There was also a basic intensive course in cranial neuronavigation for neurosurgeons and surgical assistants with the support of Medtronic and Brain Lab. We arranged all the practical training for neurosurgeons on neuronavigation in a simulation room. 3. On November 1 there was the 4th International Brain Tumour Awareness Day Symposium. Physicians, health personnel interested in the topic, students, patients and families attended an open ceremony with the Director of the local authority of health of Bucaramanga, the Dean of the Medical Faculty of UDES and the President of the Colombian Association of Neurosurgery. This was followed by various interdisciplinary academic lectures given by international and national neurosurgeons, a neurologist, a neurophysiologist, a pathologist, a radiotherapist, an endocrinologist, a nurse, and a physical therapist. They discussed progress on the diagnosis, treatment and care of patients with brain tumours. Lastly there was a patient giving their views on the difficulties and hopes of others suffering from this disease.

Above: Pre-symposium course on cranial

Above: Participants at the International Brain

neuronavigation for brain tumours

Tumor Awareness Week 4th Symposium, Bucaramanga, Colombia

The activities were developed with the support of UDES and its medical faculty, Clinica Chicamocha de Bucaramanga, the section of neurosurgical oncology of the Latin American Federation of Neurosurgical Societies (FLANC), the Colombian Association of Neurosurgery (ACNcx) and different commercial partners involved in the treatment of patients with brain tumors. The events were free. n For more information, go to: www.neurocirugiaoncologicaflanc. blogspot.com www.neurooncologiaybased ecraneoacncx.blogspot.com

Above: Students of the neurosurgical research group of the Universidad de Santander (UDES) in the 10th City of Bucaramanga Marathon, promoting the International Brain Tumour Awareness Week 4th Symposium.

IBTA Senior Advisor Chris Tse (New Zealand) met up with Al Musella of the Musella Foundation for Brain Tumor Research and Information at last year’s annual Society for NeuroOncology (SNO) conference in Miami Beach, Florida, USA. n

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The long road to beating brain tumors ERIC T Wong, Associate Professor of Neurology at Harvard Medical School and Co-director of the Brain Tumor Center & Neuro-Oncology Unit at Beth Israel Deaconess Medical Center, explains why he chose to specialize in research into brain tumors and describes his hopes for the future. IBTA: Where did you spend your childhood? Eric Wong (EW): I spent the first half of my childhood in Hong Kong and the latter half in the United States. I arrived in the US at 12 years of age and, at that age, I was old enough to experience and appreciate both eastern and western cultures. This is what I mean. As a school assignment in sixth and seventh grades, I had to study the multivolume classic The Three Kingdoms and read stories of how Zhuge Liang from the weakest kingdom outwitted, outsmarted and outmaneuvered his stronger rivals. When I entered the eighth grade in the United States, I read the Iliad in my rusty command of English, also a class assignment, and learned how Achilles outwitted, outsmarted and outmaneuvered King Agamemnon. Well, I thought, there were some similarities there. But I think the biggest difference between the two cultures is the emphasis of tradition and work in a group in my eastern heritage versus the emphasis of individualism and independent thinking in western values. I was lucky to experience both. IBTA: What made you interested in science and medicine? EW: Well, it is a long story. I was interested in math and sciences at high school in the late 1970’s in the New York City public school system. Fortunately my school had a group of very dedicated science teachers who tirelessly promoted science education there. I was actually linked up with a biology professor at St. John’s University where I performed “cell suicide” experiments by measuring the electric potential of cells in the salivary glands from tobacco hornworm when they underwent metamorphosis. I submitted the results to the Westinghouse National Science Talent Search and became one of the semi-finalists there, as 80

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Above: Eric Wong with his wife Ling and daughter Erika at the Fourth of July Independence Day celebrations in Massachusetts

well as publishing an abstract in a cell biology journal - I was hooked. At the University of Pennsylvania, I majored in electrical engineering not only because I was also interested in electronic gadgets but also because my uncles and cousins were either practicing engineers or studying to become one. So I had some role models in this field. But I never forgot my experience with biology. Some of my friends in school were pre-med and so I decided to give medicine a shot. By the time I reached senior year in college, I had to choose between interviewing for jobs in IBM or Ford Motor Company, or medicine as I was accepted at Rutgers Medical School. I decided on the latter and eventually chose to specialize in neurology because of the complexity of the brain and because many neurological diseases still had no treatment. I hoped to make some contribution. I had an exciting time when I was doing my residency at Washington University in St Louis where I learned the art of neurology from skilled clinicians as well as doing research to understand the neurobiology of ion channels with prominent neuroscientists. But it was my away rotation during my last year of residency at Memorial SloanKettering Cancer Center that solidified my

idea to become a neuro-oncologist. This is because cancer involves every part of the nervous system and, as I often tell my residents, cancer can interfere with the Betz cells in the cortex that control motor functions all the way to the neuromuscular junction in the peripheral nervous system. Therefore, a neuro-oncologist needs to have a good foundation in clinical neurology and, adding to it, clinical skills in neuro-oncology. I was fortunate to learn these skills during my formative years in neuro-oncology, from world experts at Memorial Sloan-Kettering Cancer Center and MD Anderson Cancer Center. I eventually applied these skills under the direction of my department chair, Dr. Clif Saper, at Beth Israel Deaconess Medical Center in Boston. IBTA: Why are you interested in brain tumor research? EW: I am interested in brain tumor research because there is still a lot that we do not understand from a scientific standpoint. On the therapeutic front, we are still making little progress in the treatment of malignant gliomas. Although we now have the capability to sequence the whole genome and all sorts of somatic mutations in these tumors, the success rate of treating these


patients remains unsatisfactory. So there is still a lot of work that needs to be done. IBTA: What are your current areas of research? EW: My team at Beth Israel Deaconess Medical Center is working on the clinical and basic science translational research on alternating electric fields therapy, as well as cerebrospinal fluid biomarkers and advanced MRI research. All of our effort is aimed at translating our cutting edge understanding of the physiology and biology of brain tumors into clinical practice and treatment. Knowledge about the mechanisms of action and the science behind alternating electric fields therapy is still emerging. At first glance, it is hard to understand how these fields can get from the surface of the scalp into the brain tumor. But the way that energy from the electromagnetic spectrum penetrates any surface really depends on its frequency. This was actually my first question when I originally heard about this therapy and I found a paper showing that the permittivity (a measure of the ease at which electromagnetic waves penetrate a medium) for skull, gray matter and white matter were similar at the frequency of 200 kHz. Then the next question is how it works and for that I needed help from colleagues smarter than me from the field of Signal Transduction. After about three or four years of cell biology research, my long-time collaborator Ken Swanson, Ph.D. and I are quite confident that the alternating electric fields disrupt the orderly execution of tumor cell division during mitosis. This results in the abnormal segregation of chromosomes that contain the necessary DNA materials to each daughter cell, as well as marking the cells for immune destruction. It is reassuring to know that the recently announced interim trial result showed a survival advantage when alternating electric fields therapy was added to standard treatments in newly diagnosed glioblastoma patients.

unknown is always out there. Someday, someone may stumble on one of these unknown unknowns and transform brain tumor treatment in a quantal fashion. Right now the sequencing data coming out, either from exome or whole genome sequencing, indicate that there is heterogeneity in brain tumors, particularly for the malignant gliomas. This mutational heterogeneity not only differs among patients, but also within the same tumor from each individual patient. In fact, single-cell analysis has shown that the type of somatic mutations can differ from cell to cell. By the time the malignant glioma is detected it has already evolved quite a long way in the process of accumulation of genetic and epigenetic changes over time in individual cells. This becomes “a true mess” from a therapeutic standpoint. I really think that we need to turn back the clock and work on earlier diagnosis and intervention. This is similar to Alzheimer’s or other types of neurodegenerative diseases associated with the pathological aggregation of tau protein in the human brain and where researchers are now working on earlier detection and therapies rather than later interventions when treatments do not have a chance to work. But they have more time on their hands because the diseases take years or perhaps a decade to evolve.

IBTA: What are your thoughts on the future of brain tumor treatment? EW: I would like to emphasize that research is unpredictable and quite often winds up in a dead-end. I think time will improve our cumulative understanding of the biology of brain tumors and their implications for treatment. Therefore, I can only speak about what I know right now. But the unknown

IBTA: What is the most challenging part of your work? EW: The most challenging part is dealing with the patients’ psychosocial issues while treating their disease. A patient has to deal with the challenge of his or her brain not functioning well. That dysfunction may interfere with work, driving and relations with family members.

Above: Eric and his daughter Erika leading a group

Above: The Wong family with A Reason To Ride

of riders at the A Reason to Ride Bikeathon in 2014

organizer Tom and Judy DesFosses and friends and supporters. Eric’s wife Ling speed-knit this blanket in a “Knitathon” and then donated it for auction.

The driving and work issues are particularly challenging because if patients cannot drive they cannot get to work and then they may lose their health insurance. Depending on the location in the brain that is affected, the patient may have various neurological syndromes such as a language problem (aphasia), distortion of the senses or motor dysfunction, all of which affect their activities of daily living and make them dependent on others. Furthermore, the brain and the rest of the central nervous system can be impaired by our treatments, like surgery, radiation and/or chemotherapy. Therefore, the brain tumor not only affects the patient, it also affects the patient’s family and caregivers. IBTA: What is the most gratifying part of your work? EW: The most gratifying part is when a patient or his/her family member expresses their gratitude to me. I remember one incident more than 10 years ago when I was waiting for a bus at Logan Airport in Boston. The son of a former patient who had died a few months before thanked me for caring for his father while I was waiting for the bus. That beats any professional accolade that I ever received. Now, every September, I have a special opportunity to meet my patients and their family members in the A Reason To Ride bike-a-thon organized by Tom DesFosses, who is currently in remission for his primary CNS lymphoma. It is a yearly event that my family would not miss, especially my daughter, Erika, who started leading the ride in her tricycle when she was three. Now, she is ten and we look forward to leading the ride every September. n Brain Tumour

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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.

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 which permits doxorubicin to cross the blood brain barrier in a rat model

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

Charities that have united together under the Brain Tumour Research banner include: Ali’s Dream, Anna’s Hope, Astro Brain Tumour Fund, Brain and Spine Foundation, Brain Tumour Research Campaign, brainstrust, Brainwaves NI, Charlie’s Challenge, Children’s Brain Tumour Foundation, Children’s Brain Tumour Research Centre, Danny Green Fund, Ellie Savage Memorial Trust, Inbetweenears, The Jane Packer Foundation, Levi’s Star Brain Tumour Charity, The Lisa Wiles Red Wellies Brain Tumour Support Fund, The PPR Foundation and Thorne Mason Trust.

Brain Tumour Research. A tough nut to crack.

CALL:

01296 733011 eMail:

info@braintumourresearch.org Let’s connect

www.braintumourresearch.org Registered charity number 1153487 (England and Wales) Company limited by guarantee number 08570737 (England and Wales)

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The 2014 Angels Among Us 5K & Family Event - April 26, 2014 at Duke University Campus in support of the Preston Robert Tisch Brain Tumor Center at Duke, Durham, North Carolina, USA RON and Holly Brinton let us know this was the Angels Among Us 21st Anniversary Event and participation and funds generated has increased each year. Highlights from 2014 included: $2,120,692 was raised D $2,085,934 WAS RAISE

teams There were 285 participating ipatingteams There were 285 partic 00 pre-registants re 43pre-registants we4300 There There were estimated The walk attracted an nts ipa rtic The walk attracted an estimated 5000 pa 5000 participants Angels Among Us had an estimated 5000 participants in the 5K and family fun walk through the beautiful Duke

Above & right: Memories of the 2014 Angels Among Us 5K & Family Event at Duke University

Gardens and Campus in Durham, North Carolina, USA. An estimated 13,500 miles were donated to the IBTA’s Walk Around the World for Brain Tumours! n www.angelsamongus.org

Walking for hope in the Cayman Islands ON 28th February 2015 - a very cool Saturday morning - Brain Tumour Foundation (Cayman Islands) “The Forgotten”, hosted its first annual “Walk for Hope” Charity 5K Walk/Run. Heroes Square in George Town, Grand Cayman, Cayman Islands, the capital city of the three islands, was chosen as the most fitting location of such an occasion for this great cause. The Walk/Run started and finished at the Square. The participants in this event came from a good cross section of people from all over the island. They included staff from our Health Services Authority (HSA), Cayman Islands National Insurance Company (CINICO), co-sponsors of this event, Cayman National (CNB), TrinCay Medical Services, Royal Cayman Islands Police Service (RCIPS), Ministers of our Parliament, as well as employees of the

Above: Brenda J. Archer (centre), President of Brain

Above: Brenda J. Archer (right) with the

Tumour Foundation (Cayman Islands) “The Forgotten”

Honourable Osbourne Bodden, Cayman

with the youngest participant at the walk, Rianna Jones,

Islands Minister of Community Affairs.

who walked in the 5k because both parents work in the health industry, and therefore she has had an early introduction to supporting charities for good causes. Photos by Miguel Escalante – Photo Centre

Cayman Islands Government (civil servants), families and friends of people touched and/ or affected by this illness and last but by no means least, survivors! February is our month of awareness. Proceeds from this event have been used to assist existing patients and some newly discovered patients; put towards raising awareness and our fight to continue

educating everyone in the Cayman Islands about brain tumours. We are also delighted to “donate” the mileage walked in this event to the IBTA’s Walk Around the World for Brain Tumours. We are very grateful to all those who supported us, by participating, volunteering, and donating tents, chairs, sound and music, water and refreshments. We look forward to a bigger and better event next year. With everyone’s continued help, we know this is possible. n

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Connecting brain tumour patients with advanced treatments and clinical trials Dellann Elliott Mydland, Founder and President of the Chris Elliott Fund/ EndBrainCancer Initiative Seattle, Washington, USA

genomic differences between primary and secondary GBM subtypes and that there were two distinct molecular and clinical secondary GBM entities. (Marked Genomic Differences Characterize Primary and Secondary Glioblastoma Subtypes and Identify Two Distinct Molecular and Clinical Secondary Glioblastoma Entities, Cancer Research 2006; 66: (23). December 1, 2006, pp. 11502-11513).

en Chris Elliott Fund

Enhancing lives and

empowering patients by closing the existing gap from initial diagnosis to immediate and

expanded access to advanced treatment, clinical trials, and critical care.

WHEN my late husband, Chris Elliott, was diagnosed in 2000 with terminal brain cancer, glioblastoma multiforme/GBM, he was 39. He was in the prime of his life, the father of two young children and was given just one year to live. We kept hearing the words: “We’re sorry, there’s nothing more we can do.” This was just not acceptable to either of us. During our 22-month journey, we learned that many long-term survivors of this disease knew about genomic testing of their brain tumor tissue and participated in clinical trials. At the time, we wondered why everyone didn’t get this information and wasn’t given these options immediately upon diagnosis. Unfortunately, this is still true for about 80 percent of brain tumor patients here in the United States. Today I help extend lives by providing 84

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Above: The Elliott family

immediate access to advanced brain tumor treatments and clinical trials for brain tumor patients. Chris and I co-founded the Chris Elliott Fund in 2002 three weeks before he died to do something about this disease. Our initial focus in 2002 was on funding selected research: n The seed research money and initiative that lead to the discovery that GBM is not one disease but that there were marked

Above: The Chris Elliott Fund Team 2015

n Research that identified the genes that cause GBM as well as the research that prioritized these genes, with GBM being one of the first two cancers explored in the pilot phase of The Cancer Genome Atlas.

n This work also underscored the argument for precision medicine in brain cancer and the importance of tumor profiling and genomic testing.

At the same time, we were also focusing on providing brain tumor patients with the help and education they needed in obtaining the best treatment as well as connecting them with leading US neurooncologists and neuro-surgeons.


In an ideal world, we would know to ask these things, but the reality is that very few patients or their families know what to ask, or even that there could be options. We have provided the questions and answers in our series of fact sheets and our personalized Patient Information Packets. Our personally-vetted network of physicians is also thrilled because they have limited time, and it’s extremely helpful when they find that patients come prepared to their doctor’s visit. The intent of our public awareness campaigns is to help patients and their families know what to ask.

Stepping up advocacy work in the war on cancer Above: Advocacy work in Washington DC

Fast forward to 2015 We have learned that connecting patients with physicians who are expert in their field is so important. This is because leading cancer centers and brain tumor hospitals are the places with the most treatment options and the most clinical trials, so vital for extended survivorship and improved quality of life. We are able to make these connections through our national, and expanding network of brain tumor experts. Two years ago, we greatly expanded our patient support services and opened our Brain Tumor Patient Support and Call Center just outside Seattle, Washington. We are still staffing-up to meet the ever-increasing demand. Through our care coordinator team, we are able to provide unique, one-on-one, personalized support and immediate access to advanced treatment options, clinical trial opportunities and some of the best neuro-oncologists and neurosurgeons across the USA. Requests for help come in via phone, email, in person, web portal, and increasingly via online chat and social media. In addition, we educate the general public on matters related to brain cancer. This is because, with a brain tumor diagnosis, there is often very little time between diagnosis and surgery….very little time to ask for things such as a second opinion or whether enrolling in a clinical trial might be the best course of action.

For GBM brain tumor patients where survival is often typically measured in months, not years, it is critically important to make new life-saving treatments available as soon as possible. Often the holdup in the US is not just the time it takes to develop a therapy and FDA approval time, but that the treatment isn’t classified properly by Medicare, especially where no clear precedent exists. Or there may be instances where the supporting data wasn’t coded properly in the initial studies. Over the past few years, I have been called upon several times to provide the perspective of a patient advocacy organization in hearings where Medicare was either unwilling to support the use of a particular treatment or where the reimbursement amount was extremely low due to classification and coding issues. In the United States, other insurance companies will generally follow Medicare practices in their own reimbursement of patient medical expenses. As an example of a cancer where there is huge unmet need, we in the brain tumor community can set the right precedent for other cancers by campaigning for faster access to cuttingedge therapies and for genomic testing being part of standard protocol for all brain tumor patients. Looking back to 2002, I want to say how excited I am about all the advances that have been made since glioblastoma multiforme claimed the life of my late husband. While much remains to be done, we have many more treatment options

available now, and genomic testing is becoming a bit more mainstream. There are more centers offering advanced treatment options, and new discoveries are being made every day, with additional promising treatments on the horizon. Yet the need for connecting patients with life-extending therapies remains. And it’s especially wonderful to be counted among those organizations globally who share a common vision of a world without brain cancer. n For more information about The Chris Elliott Fund/EndBrainCancer Initiative or to contact a care coordinator team member, please visit. http://chriselliottfund.org/

Conquering brain tumours together! ON Saturday 27 September 2014, supporters, employees, families and friends of Brain Tumour Research in the UK all joined to ‘Conquer it Together’. Raising just under £3,000, the 11-mile walk along the Grand Union Canal in Leighton Buzzard, England was a fun and successful day that all 30 of the troop enjoyed – including their four-legged friends! The walked mileage from this event was “donated” to the IBTA’s 2014 Walk Around the World for Brain Tumours. n

Above: The picturesque Grand Union Canal in Leighton Buzzard, England, was the scenic backdrop for the Brain Tumour Research “Conquer it Together” fundraising walk.

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

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Brain Tumor Patient and Caregivers’ Association Turkey

Keeping The Hope Alive Across Continents www.beyintumoru.org

.inform .educate .support

/beyin.tumoru

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Brain Tumour

@beyintumoru

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


The 2015 Asian Society for Neuro-Oncology (ASNO) Conference in Manila

THE Philippine population has now reached more than a hundred million people. Healthcare, as a whole, is minimally subsidized by government insurance covering only about $1000 per year in hospital expenses per patient. There is a huge gap between rich and poor with only ten percent of the population able to receive healthcare on a par with the best healthcare in the world. The poorest people in the Philippines are unable even to obtain a doctor's consultation. In neuro-oncology, the divide is even greater because of the high cost of diagnostics and treatment. Although government hospitals provide free services such as craniotomies for tumor removal and, in recent years, a large subsidy for radiation treatment and generic temozolomide, many problems remain. There are only about 100 neurosurgeons in the Philippines, many of whom are based in Metro Manila and large urban centers. Only three of these doctors are dedicated to neuro-oncology practice. The 12th Meeting of the Asian Society for Neuro-Oncology (ASNO) will be held from 17 - 20 September 2015 at the Sofitel Philippine Plaza Hotel, Manila, Philippines. Such conferences in this region disseminate information which helps guide neurosurgeons, neurologists, medical oncologists, radiation oncologists and others who – although not necessarily specializing in neuro-oncology – see patients with brain tumors on a regular basis. This knowledge, in turn, helps to provide patients with optimal treatment. The 2015 ASNO meeting is hosted by

the Philippine Society for Neuro-Oncology (PSNO) and the Academy of Filipino Neurosurgeons (AFN). The theme of the collaborative, multidisciplinary conference is “NeuroOncology Challenges in a Diverse Asia”

and the content of the meeting will provide cutting-edge educational and scientific experiences focusing on the latest developments in understanding and treating brain tumors and neurological problems associated with cancer. n

Among the list of faculty for the ASNO 2015 meeting are international experts in the field of neuro-oncology: Hadio Ali, Julette Marie Batara, Mutya Bernardo, Miriam Calaguas, Susan Chang, Zhong-ping Chen, Kevin Chua, Caterina Giannini, Charity Gorospe, Stuart Grossman, Yong-kil Hong, Rajan Jain, Rakesh Jalali, Santosh Kesari, Kathlyn Khu, Turker Kilic, Fred Lang, Manuel Mariano, Edwin Munoz, Alex Radbruch, Mark Rosenthal, Marlon Saria, Lye Mon Tho, Sith Sathornsumetee, Roy Allan Torcuator, Hirohiko Tsujii, Gelareh Zadeh and the World Federation of Neuro-Oncology Societies (WFNOS) Committee. For more information and registration details please visit www.asno2015.com

KORTNEY'S Challenge (USA) is an annual fun run/walk established in memory of nine-year old Kortney Rose Gillette who lost her brave battle with brain cancer in 2006. The Foundation raises money for funding research into better treatments and cures for pediatric brain tumors. The Foundation also focuses on raising awareness of the disease. The above photo is from the 2014 Kortney’s Challenge which drew a record attendance and funds. The Foundation donates the money raised from this event to The Children’s Hospital of Philadelphia (CHOP). n

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Words to live by:

an interview with a 28-year brain tumor survivor and his caregiver Jean Arzbaecher RN, MS, APN The University of Illinois in Chicago, USA DOES your emotional and spiritual outlook contribute to survival with a brain tumor? Rich Portwood thinks yes. I first met Rich and his wife Chris ten years ago. At that time he had already been challenged with a brain tumor for 18 years and was experiencing his fourth recurrence. I have had the privilege of assisting them on this journey since that time and am honored to share their story. Rich Portwood was a fun-loving, healthy 30 year-old who woke up in the hospital after experiencing a seizure while driving, having run his truck into a traffic signal. Ironically, his job at the time was installing and maintaining traffic signals! He was diagnosed with a grade 2 oligodendroglioma and told by a local neurosurgeon to “go home and put your affairs in order”. Choosing not to accept the “doom and gloom” message, he sought a second opinion at the University of Chicago, where surgery was performed. Twenty-eight years later, after ten surgeries, three types of radiation, and numerous chemotherapies, he is still beating the odds. Rich and his wife Chris have been an inspiration to many brain cancer survivors and caregivers. They were instrumental five years ago in starting a brain tumor support group for people living in the southwest Chicagoland area. This group has grown to be one of the largest in the country. The Portwoods are always willing to tell their story and agreed to be interviewed for Brain Tumour magazine so they could share some of the details of their journey. What top three lessons have you learned on your brain tumor journey? Rich Portwood: First, be careful what you 88

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Above: A beautiful day - Chris and Rich Portwood’s wedding

think because every cell in your body is listening. I was told this by a neurosurgeon 28 years ago and have carried that advice with me every day since. Second, I truly believe that I’m still here because God has more work for me to do. Third, better days are always just around the corner. Chris Portwood: I agree with Rich and trust in God. I believe our lives are in His hands and He alone knows your last day. Your doctor and team matter; find someone who has a passion for brain tumor patients and who doesn’t believe in expiration dates. One of the best things we heard from our neuro oncologist Dr. Nicholas is: “If you tell someone they’re going to die, they might believe you.” This is a great roller coaster of experiences and emotions; just when you think this is as good as it gets or that the end is near, it takes another turn and surprises you. Believe there is always hope.

What is the most challenging thing you have experienced on your journey and how did you deal with it? Rich: Being forced to say goodbye to the “old Rich”. I deal with it by not concentrating on what was lost but on the good in what is left. If you’re not careful, the many things you’ve lost will dominate your thoughts, especially in quiet times. Chris: Watching the one you love go through the stages of brain cancer and its struggles, knowing I can’t take it away was one of the most challenging things for me as a caregiver. I deal with it by finding time to take care of myself, getting a manicure or massage, or going to a movie with friends. I get to escape every now and then, but Rich doesn’t. Ultimately, having faith has helped. Even if he doesn’t survive this, I know he knows where he is going after this life and that gives me comfort and peace. Rich, as a survivor, what advice would you give to a caregiver? Rich: It’s important for caregivers and survivors to take time to understand each other’s problems so they can help each other by walking in each other’s shoes. Also, the person you see every day might not remember (or see) themselves as you see them. Remember that the person you’re caring for may be the exception to the rule. For instance, I was told 28 years ago that I might only live six months to a year. Chris, as a caregiver, what advice would you give to a survivor? Chris: I remember Rich saying early on that he does not have the time or inclination to spend time with anyone who was


mourning his death before it happened. Don’t give in and don’t give up hope! Be patient with your caregiver, it’s harder than it looks! Caregivers are not trying to be your mother (unless they are). They’re just incredibly concerned and want to help. It’s not just your tumor, it’s “our” tumor, and we’re going through this journey together as a couple and as a family. Why was it important to start a brain tumor support group? Rich: Living with brain cancer puts you under a lot of pressure. Attending a support group lets you know that you’re not alone. It has been extremely beneficial to talk to other people who really understand what you’re going through because they are going through a lot of the same things. Surprisingly, we laugh a lot. But we also shed tears. It’s also interesting to see how the same medications or treatments affect people differently. You never know how having a brain tumor is going to affect you. One day you can be okay and the next day you’re falling down and you can’t do anything. On the down days, it’s good to know there

Above: Advance Practice Nurse Jean Arzbaecher (left) with Rich Portwood (centre) and his wife Chris (right). Rich is a 28-year survivor of a brain tumor.

are others you can talk to and find support. Having Jean [Arzbaecher] at the group meetings provides balance in understanding the disease, treatments and their effects. She sets up doctors, nurses, physical therapists and others to speak to the group. Her knowledge, warmth and laughter help the group survive. Her dedication is inspiring. If you can’t do anything else, you can start a brain tumor support group. Our advice is to find your own “Jean” to help you on your journey.

Chris: Things were getting difficult for us. We wondered if other people were experiencing the same things and how they were dealing with issues like shortterm memory loss, falling, opening doors and walking away, or mood swings that we later found were caused by medication. We couldn’t find a brain tumor group in our area, so I thought, if you can’t find one, create one! To quote the famous Kevin Costner film, Field of Dreams, “If you build it they will come”. So one day while we were at the clinic for a visit, I said to our nurse, Jean Arzbaecher: “It would be great to start a brain tumor support group.” Jean said she was willing to facilitate it. We worked together and contacted our local cancer support center to find space, picked a regular time to meet and then spread the word. We started with 12 people five years ago and we now have 30-50 people affected by brain tumors who show up every month. Rich says: “If you get 50 people with 25 brains together in one room, you never know what will happen!” And that is true! n

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Unmasking the secrets of cancer cell growth: what’s next in the investigation of glioblastoma? Dr Sara Piccirillo, Research Associate Department of Clinical Neurosciences, Cambridge Centre for Brain Repair, Cambridge University, UK

IT is an interesting time for research in glioblastoma (GBM). Recent years have seen the explosion of next generation sequencing technologies involving the process of determining the precise order of the building blocks that make up a strand of DNA. Next generation sequencing, also known as “high-throughput sequencing”, makes this process much faster and cheaper by conducting the process as parallel, instead of sequential, operations. Applying these sequencing technologies to GBM, we are now certain that this disease is a remarkable example of a highly heterogeneous (diverse) tumour at every level, from bulk tumour mass to the single cell. It is fascinating for a researcher to know the genetics and phenotype (the organism’s characteristics resulting from both genetic and environmental factors, and the interactions between the two) of single cells in such a complicated system as that of the highly aggressive glioblastoma. But what else does this tell us?

Understanding GBM We are at a very early stage in our understanding and there is obviously much yet to be explored and clarified. The cancer stem cell hypothesis created a lot of excitement. This hypothesis proposes that among all cancerous cells, a few act as stem cells that reproduce themselves and sustain the cancer, much like normal stem cells normally renew and sustain our organs and tissues. In other words, the cancer is 90

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But more detailed temporal studies are also needed to understand not only what happened when the tumour originated, but also the next stage in its development. This should help us identify the target to hit so that we can design more effective therapies.

Where does GBM come from?

Above: Dr Sara Piccirillo working in the lab of Dr. R. Bachoo and Dr. E. Maher at the Annette G. Strauss Center of Neuro-Oncology, University of Texas Southwestern Medical Center, Dallas, USA.

primarily driven by a small population of stem cells. But we now know (at least in GBM) that many cells that are responsible for tumour growth are genetically and functionally diverse. The tumour is made up of a heterogeneous population that also changes over time, thus further complicating the scenario of tumour growth and targeting. If we imagine that cells can wear different coloured masks, what we observe in GBM is a scenario where the colours also change over time (spatial and temporal heterogeneity). We have just started to understand the spatial heterogeneity in GBM, and hence what happened in the tumour before this complicated (multi-coloured) scenario.

From a phenotypic perspective, the debate about cancer stem cells and cell of origin in GBM is still open. For the past 60 years we have been developing animal models to mimic this human disease in order to understand where the tumour comes from. With the advent of geneticallyengineered mouse models, we have been able to target (sometimes with only limited precision) specific brain cell populations and we have started to understand how susceptible these cells are to the malignant transformation leading to the formation of GBM. Unfortunately, it appears that GBM can originate from many different cell types. Thus, it has been extremely important to have some insights from human GBM. We have recently shown that in 65 percent of our GBM patients the neurogenic area of the human brain (where the stem cells reside) contains tumour cells that contribute to tumour growth and show a distinct pattern of response to chemotherapy, contrary to the cells isolated from the tumour mass in the same patients.

The chameleon nature of GBM is challenging Besides being overwhelmed by all these


recent discoveries, one question keeps popping into my head: how can we use the information about the function and structure of the genome (the complete set of DNA within a single cell of an organism) to understand the “chameleon” nature of GBM cells? It is critical that we understand the function of each key genetic player identified by genomic analyses and work out how they are inter-related. In order to understand complex issues like the heterogeneity of GBM cells, we have to separate the individual elements. Once we have insights into each of these, we can try to combine them all to prove (or disprove) that this is what actually occurs in GBM patients. So, I have started working on the functional role of oncogenes (genes that have the potential to cause cancer) and tumour suppressors. These are genes that protect a cell from one step on the path to cancer. When this gene mutates to cause a loss or reduction in its function, the cell can progress to cancer. In my research I am using tumour cells that mimic the stepwise malignant growth of GBM. This research led me to the University of Texas Southwestern Medical Center in Dallas where I worked as a visiting scientist for six months in the lab of Dr R. Bachoo and Dr E. Maher at the Annette G. Strauss Center of Neuro-Oncology. It was a fantastic experience (including the perpetually warm weather) and I hope to have made a further step in starting to address the question above.

we can finally describe it as “treatment sensitive”, and a “better outcome” cancer. I am deeply aware of the devastating effect that GBM has not only on patients but their friends and families too. We, as researchers, face a big challenge in helping to improve outcomes for GBM but, as we have learned from the changeable nature of this tumour, things can be different and we are working steadfastly towards extended survival and eventually - hopefully - a cure. n

References: Piccirillo SGM, Colman S, Potter NE, van Delft FW, Lillis S, Carnicer M-J, Kearney L, Watts C, Greaves M. Genetic and functional diversity of propagating cells in glioblastoma. Stem Cell Reports. 2015 Jan 13;4(1):7-15. Piccirillo SGM, Spiteri I, Sottoriva A, Touloumis A, Ber S, Price SJ, Heywood R, Francis NJ, Howarth KD, Collins VP, Venkitaraman AR, Curtis C, Marioni JC, Tavaré S, Watts C. Contributions to Drug Resistance in Glioblastoma Derived from Malignant Cells in the Sub-Ependymal Zone. Cancer Res. 2015 Jan 1;75(1): 194-202.

Shine on Starry Nights! IN 2014 the Pediatric Brain Tumor Foundation (USA) launched Starry Night, a series of 8.5K walks/runs that shine a light on children with brain tumors. These “Stars” inspired nearly 2,500 participants to take 56,560,000 steps in seven American cities. Together they raised more than $290,000 to fund lifesaving medical research and life-changing family support programs. The walking mileage achieved during the Starry Night events resulted in a total of 16,532 kms being “donated” to the Walk Around the World for Brain Tumours. Thanks, PBTF! In addition to the 8.5K, Starry Night events include activities for kids, entertainment and a lantern lighting ceremony that honors Stars and symbolizes hope for the future. Seven Starry Night 8.5K events are planned for 2015. To learn more, go to www.mystarrynight.org n

Patel AP, Tirosh I, Trombetta JJ, Shalek AK, Gillespie SM, Wakimoto H, Cahill DP, Nahed BV, Curry WT, Martuza RL, Louis DN, Rozenblatt-Rosen O, Suvà ML, Regev A, Bernstein BE. Single-cell RNA-seq highlights intratumoral heterogeneity in primary glioblastoma. Science. 2014 Jun

Into the future What is certain is that GBM is an extremely complicated tumour in every aspect. But this is what makes research into GBM both fascinating and challenging. I am sure that there will be more interdisciplinary research in the future and that this will speed up progress. Because of its poor prognosis and resistance to treatment, there is increasing interest in GBM which should be of comfort and encouragement to people who are affected by this disease. I am driven by a strong desire to contribute to a change in the way we describe GBM as a “poor prognosis” disease and hope that one day soon

20;344(6190):1396-401.

Above: Three PBTF Starry Night walkers on their way!

Sottoriva A, Spiteri S, Piccirillo SGM, Touloumis A, Collins VP, Marioni JC, Curtis C, Watts C, Tavaré S. Intra-tumor heterogeneity in human glioblastoma reflects cancer evolutionary dynamics. PNAS 2013 Mar 5;110(10): 4009-14. Piccirillo SGM, Dietz S, Madhu B, Griffiths J, Price SJ, Collins VP, Watts C. Fluorescenceguided surgical sampling of glioblastoma identifies phenotypically distinct tumourinitiating cell populations in the tumour

Above: Thumbs up for success –

mass and margin. Br J Cancer. 2012 Jul

supporter Ashley Yu shows her

24;107:462-8.

enthusiasm for the Starry Night events.

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Nurse helps to make things better Rapid expansion for a new Croatian brain tumour patient and caregiver group Krešimir Loncar, oncologist, Clinical Hospital Centre Zagreb Croatia

AS a nurse Valerija Korent knew quite a lot about illness and the problems it brought for both patients and families. But when her husband was diagnosed with a brain tumour she discovered exactly what it meant to face such a life-changing disease. In her home country of Croatia there was no support organisation for the 640 new cases every year. Patients and families had no one to explain the condition in layman’s terms and offer advice and guidance on treatments available. Valerija discovered that patients had to find their way through complicated healthcare systems, and there was limited support. For example psychological support in Croatia was not a standard part of treatment for patients with brain tumours. It was important to raise public awareness, to help patients return to daily life, and also to raise the standards of treatment.

More challenges There are other problems too. Croatian neuro-oncologists have limited availability of medicines. Molecular diagnostics are not available and for certain tests patients often have to travel to Slovenia or Italy. In Croatia, with a population of 4.2 million, there are just six neurosurgical centers. Three are located in the capital and treat the vast majority of patients. There are five radiotherapy centers in which there are neuro-oncologists - mainly specialists in the field of radiotherapy/clinical oncology. 92

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Above: Valerija Korent, nurse and the author of the Croatian-language brochure Living with a Brain Tumor, who is also the president of the Glia Association, the Croatian organisation for brain tumor patients.

Because of this distribution, availability of treatment and rehabilitation is not ideal. Currently there are no clinical trials in Croatia for brain tumours and unfortunately, Croatia has not yet achieved the desired level of cooperation with European and international professional organizations such as the EORTC, ESTRO, etc which would allow Croatian patients to participate in multicenter trials. Medicines, supportive therapy and rehabilitation costs represent a challenge for hospital funds and the economic standard of patients. Many nurses and doctors leave the country to work abroad, and it is difficult to recruit the necessary new staff.

Valerija’s inspirational initiative Valerija decided to set up her own group

to help others with the problems she had faced. Now she is president of the Glia Association which has 60 members and is growing rapidly. One of her first jobs was to write a brochure in Croatian, called Living with a Brain Tumour. This brochure was released in 2013 and was the first to explain the disease in plain language. It offers basic information about the disease, symptoms, diagnosis and treatment. In the brochure Valerija writes about her experience of living with a person affected by a brain tumour. She said: "It was very difficult to cope with the diagnosis and the fact that a loved one is suffering from a malignant disease, but this fact you cannot change. It is vital to adjust quickly to the new situation and try to live with it, because it is the only way we can help an ill person.”

The Glia Association is launched Two years after her husband died, Valerija got together with two oncologists at the Clinical Hospital Centre in Zagreb, Ana Misir Krpan and Kresimir Loncar. Together they launched Glia with the aim of bringing together not only those being treated for a brain tumour, but all those who are involved in their treatment and recovery. The first meeting was held last June and the group has been very active since then. They are currently looking for an office and have already held two meetings for patients, their families and the medical staff, with a very good response and interest. In addition to a lively exchange of experiences, meetings included lectures by experts from different disciplines. The association has set up a website


-

Opera singer Russell Watson meets the Norfolk-based Astro Brain Tumour Fund

Above: Members of the Glia Association in Croatia

which is the main communication channel with members and other patients. Recently there was an article published about the association in the national daily newspaper. Glia’s main objective is informing patients and their families about the disease, and getting the best

treatment taking into account the current situation in Croatia. n For more information about the Glia Association, visit their website at www.glia.hr

The Croatian history professor:

one academic’s brain tumour experience WHEN I was a child I listened to comments about being healthier than all my friends. I had no childhood illness, had the flu three times in my life, and only visited the doctor about once a year. Therefore it was an even greater shock when I was diagnosed with a brain tumour. And the first results showed it was the worst kind. Scared and startled by this difficult diagnosis, at first I experienced it as a death sentence. As a professor of history, which is quite different from the profession of medicine, it was initially very difficult to keep track of what the doctors were saying and decipher their findings. I spent hours and hours on the Internet trying to get information about the disease and trying to translate and explain to myself many of the unfamiliar medical terms. In a short time many beliefs about the cancer and medicine in general collapsed. I thought it was a disease only for the old and otherwise ill people. How

could something like that happen to me at the age of 35? I was not aware that the brain is still a mystery for modern medicine and that the choice of drugs for brain tumours is very limited. I was happy that I got to the best hospital in Croatia, but then I realised that even the best doctors in our country do not have optimal working conditions. In Croatia, I could not have molecular diagnostics, so I decided to look for a second opinion abroad, at my own expense. The news, fortunately, was good: I did not have the most malignant tumor. This finding properly directed my therapy. Today, years later, my medical record says "no reliable signs of disease activity," and my 12-letter diagnosis in Latin I pronounce with ease. I'm still shaking days before each MRI, but now I'm a better informed patient and ready for medical challenges in the future. (Patient BN, age 39) n

RENOWNED English tenor Russell Watson was diagnosed with a pituitary tumour in 2006 which, after initial treatment, recurred a year later. He has spoken publicly about the urgent need for greater awareness of brain tumours and more research into their causes and treatments. The Astro Brain Tumour Fund (ABTF) – based in the United Kingdom and specializing in support for and research into low grade gliomas – met up with Russell at a performance he gave at the Corn Exchange, King’s Lynn, Norfolk near to where the ABTF is based. Pictured with Russell (centre) are Astro Brain Tumour Fund supporters (left to right) Trevor Forecast, Val Minns, Christine Forecast (Secretary), Linda Rickford (Trustee), Robbie Burton and Mary Burton (Treasurer).

Astro Brain Tumour Fund supporters with collection buckets at the ready raised £259 for brain tumour research from generous members of the public after a performance in April by English tenor Russell Watson. n

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Lest we forget... Brain Tumour Alliance Australia observes both Brain Cancer Action Week in May and International Brain Tumour Awareness Week in October Matthew Pitt, Chair of Brain Tumour Alliance Australia (BTAA) FOR those living with a serious disease – and few are more serious than brain tumours – every day is marked by its challenges. It would be nice if the burden was only felt during the commemorative day, the week, or even the month which is set aside for specifically raising awareness of the challenges of brain tumours. On the other end of the extreme is the rest of the public, most of whom have had little to no close experience of a serious illness. For them, special days, weeks and months for various diseases, conditions, and other adversities float past in a continuous stream, and keeping up with them feels an impossible task. So, it could be argued that neither segment is benefitting from these annual occasions. But on the other hand, one of the longest-standing special annual occasions - Remembrance Day which is observed to recall the end of hostilities of World War I on that date in 1918 - is the 11th hour, of the 11th day, of the 11th month. The words for that remembrance include those from Laurence Binyon’s Poem, ‘For the Fallen’: They shall grow not old, as we that are left grow old: Age shall not weary them, nor the years condemn. At the going down of the sun and in the morning, We will remember them." This is not to equate the terrible sacrifice made by soldiers in war to the involuntary suffering of people with serious diseases. Instead, it is to highlight that faced with 94

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Above: The Brain Tumour Alliance Australia 2014 Summit. The 27 persons in the photo represent over 12 Australian organisations working to support people with brain tumours - patients, carers and advocates.

otherwise incomprehensible loss, a time honoured tradition is to take a dedicated time to actively remember and reflect on what exactly was lost, and why. In Australia these two special weeks allow the brain tumour and general community to place particular emphasis on: ‘Why does it have to be so?’ Personally, during these special weeks I think of all those individuals whose words have stirred me over the years and who have since passed away. I think of their struggle, their passion for advocacy, and the insensibility of their loss. Why did they have to pass away? What did they tell all those who listened? What would they say if they were still here today? Why was their disease incurable, while each day medical science advances in leaps and bounds for other conditions? I picture a parallel universe or two, where all those who lost their lives to serious diseases were instead provided with effective treatments, and go on to live well into old age. These annual awareness-raising occasions bind together those left behind, those living

with the disease, and those with an interest in the question: ‘Why does it have to be so?’ It emboldens this cohort to be more strident in advocacy, to know they’re not alone, and to not feel shy in discussing their experiences or their activities to improve treatment options and other services. On that note, it is worth remembering the Second National Brain Tumour Alliance Australia Summit, held during International Brain Tumour Awareness Week 2014, where consumer advocates contributed ideas on how to advance research and support. We are working towards a national plan. The top suggestions at the summit were:

Prevention n

more general practitioner (GP) awareness

Diagnosis earlier access to GPs and MRIs three-month follow-up (post-diagnosis) for clarification/understanding n brain cancer sniffer dogs (Why not! Sniffer dogs exist for melanoma.) n n


Treatment n every child to have access to a clinical trial n fast track drugs (targeted therapies) to the Australian Pharmaceutical Benefits Scheme (PBS reimbursed treatments)

Support and care n neuro-oncology care coordinators for every patient n age-appropriate rehabilitation and care

Research

Above: On a break at the BTAA Summit - Matt Pitt

more money for globally co-ordinated research n Australian involvement in globally coordinated clinical trials

(left), chair of BTAA with Robert De Rose (Isabella

n

Research enablers patient database for researchers (across all parameters) n public awareness of brain cancer issues n

Other n more promotion/awareness /advertising n high profile representation n single national flag bearer

and Marcus Foundation).

The most-widely supported top priorities were care coordinators and more money for globally coordinated research. BTAA believes brain tumour care coordinators make a huge difference to patients and their families - providing support through treatment decisions and other areas. We continue to advocate for more funding so everyone has access to these services. While BTAA is not able to fund these positions, BTAA provides educational grants to enable allied health professionals to attend professional development/training events within Australia and internationally, with assistance from the Nicola Scott Educational Trust. n

Attendees at the 2014 Brain Tumour Alliance Australia (BTAA) Summit included representatives from groups around Australia: BTAA, Blackwood 8, Grey Matters, the ACT Brain Tumour Support Network, the James Crofts Hope Foundation, the United Brain Tumour Support Group, the Brisbane Brain Tumour support group, the Cure Starts Now, the Cure Brain Cancer Foundation, the Peace of Mind Foundation, the Robert Connor Dawes Fund, the PNet Cancer Foundation, the Cancer Council Victoria and Brainlink. Several more groups sent apologies but are keen to participate in the next Summit. bout these support organisations can be found on our web site www.btaa.org.au Sadly, author and active patient and research advocate Sally White from Blackwood 8 was unable to attend the summit due to ill-health. Sally passed away in January 2015. Her legacy will inspire us all to do more for advocacy and to savor each day as survivors.

Rain didn’t dampen walkers’ spirits DAE Smith wrote to us to tell us about the Head for the Cure 5K run/walk which was held in April 2015 in Omaha, USA. She said: “This was our second annual event in Omaha. Our 5K events are great days of celebration for those going through this disease, or for families of those that have passed. We raise money for brain cancer research and always try and raise awareness around this disease as well. We had 549 people sign up and even with the rain we still had a great turnout and great energy for this cause! The total distance walked during the Head for the Cure event was 1250 km which was kindly donated to the IBTA’s Walk Around the World for Brain Tumours. A whopping $35,000 (USD) was raised for brain tumour research! n

Above and right: Some of the participants in the Omaha Head for the Cure event

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Every one a winner! Dr Nehal R Khanna and Dr Rakesh Jalali Tata Memorial Hospital, India

TEN children from India scooped eight medals, including three golds, when they competed in the World Children’s Winners Games in Moscow last year. The youngsters were among 500 children from a total of 14 countries who had overcome cancer. The international event, set up in 2010 by the non-profit organization Gift of Life, has hosted over 13,000 children from over 16 countries across the world and has had huge impact on their lives. Gold medallist Manali, a 15 year old Indian brain tumour survivor said: “Life is the most precious gift to us by God and since I am blessed with this gift, I enjoy every moment of my life. I always try to find life in every moment rather than moments in life. This is what Winners Games has taught me.” Another brain tumour survivor Ashwini Sharma, 12, said: “Participation in the Winners Games was like a new beginning in my life. Having interacted with and seeing many children like me actively participating in different sports was a huge confidence booster. Since then I have won several awards in chess and I am keen on pursuing it as a career.” Life had come to a standstill for 11-year-old Sohel Dutta, who has been battling a brain tumour for two years. “Winners Games was a high point in my life. I thank my doctors at Tata Hospital for encouraging me to participate in chess and table tennis. Though I did not win a medal, participation in these games liberated me from the fear of sickness,” says Sohel. The children participated in sports like table tennis, football, chess, supported walk/running and rifle shooting. The children from India received eight medals of which three were gold, one silver and four bronze. Of these, three children were brain tumour survivors. 96

Brain Tumour

Above: Brain Tumour Foundation of India (BTF) facilitated the participation of a team of young cancer patients - including three with brain tumours - at an international competition.

The participation was facilitated by the Brain Tumour Foundation (BTF) of India with generous support of the pediatric oncology team, the ImPaCCT Foundation, several volunteers and donors. The young Games enthusiasts practiced for over three months under expert guidance from trained professionals to represent their country for the first time in an international event. Dr Nehal Khanna, paediatric oncologist at Tata Memorial Hospital led the team along with two social workers and a parent of each child. Winners Games is not just an athletic event. It is a celebration of victory for these children - a victory over the dreaded disease, as well as a victory over fear. Having being deprived of the freedom of active sports during their long treatments, it was very important for them to feel free and be able to achieve. The Indian team’s slogan was “MINDS without FEAR”. Dr Rakesh Jalali, neuro-oncologist at Tata Memorial Hospital and in-charge of

Above: Excited young Indian participants at the World Children’s Winners Games in Moscow last year.

the Brain Tumor Foundation of India (who were originally invited to send an Indian delegation) said: “We understand that participation in itself is an achievement worth celebrating. These children are star kids and an inspiration for other children battling cancer today.” n


Above: The colourful poster in Hong Kong advertises the Brain Trekking 2015 event. Above: Dr Danny Chan (Hong Kong) and his Brain Trekkers have been long standing, enthusiastic supporters of the Walk Around the World for Brain Tumours. This year, Danny reported: "On a wonderful Saturday morning, 416 trekkers and 12 dogs finished the 3.5 km-walk at the Peak of Hong Kong on 25 April 2015. The Chinese University of Hong Kong (CUHK) Otto Wong Brain Tumour Centre's eighth brain tumour awareness walkathon "Brain Trekking 2015” collected 1498 km for the IBTA’s “World Walk”. One of the guests of honor, Deanna - the first guide dog in Hong Kong - attracted 11 more dogs to join Brain Trekking. Brain Trekkers continue to champion mileage donation to the IBTA among Asian countries.

The Box Hill Bunch walks a scenic Surrey landscape in memory of a courageous brain tumour patient MIRANDA Baxter-Russell's older brother Colin Oliver was the inspiration for a World Walk stroll through the Surrey (UK) beauty spot known as Box Hill. There are amazing views from the top of Box Hill which stretch for 26 miles towards the south coast of England. This beautiful country park takes its name from the ancient box woodland found on its steep west-facing slopes. The roads around Box Hill also provided the route for the 2012 Summer Olympics cycling road race events. Miranda wrote: “On Sunday 18th March the sun was shining as we embarked on a mile-long, picturesque walk around the summit of Box Hill, Surrey in aid of the IBTA’s Walk Around the World for Brain Tumours. “Family and friends - including two toy poodles, Charlie and Bertie and a West Highland terrier puppy called Alan Kimble

World Walk while at the same time enjoying some of Surrey's most delightful sights,” Miranda said. “I organised this particular awarenessraising effort in memory of my late brother, Colin Oliver, whose incredible courage and fortitude was, and still is, an inspiration to us all. We’re proud to donate 32 kms to the Walk Around the World for Brain Tumours.” n Above: The Box Hill Bunch just prior to their Walk Around the World for Brain Tumours in Surrey, UK.

- enjoyed the popular 'Hill Top Stroll' route, which incorporates stunning views of the South Downs from the famous viewpoint, the old abandoned mobilisation fort that made up part of the line of England’s defences in the 1890s and the eerie but evocative Labilliere's memorial stone. “It was a pleasure to take part in the

Above: Walkers pass the viewing point at the summit of Box Hill.

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Singapore’s First Brain Tumour Awareness Day Eleanor Slade Brain Tumour Society (Singapore) Business Development Manager

MELISSA Lim was devastated when her mother died from brain cancer in 1998. Five years later she too was diagnosed with a brain tumour. Melissa’s personal experience led her to help form Singapore’s first non-profit organisation dedicated to raising awareness of brain tumours and providing support for patients and caregivers - the Brain Tumour Society (Singapore) - BTSS. BTSS’ incredible journey began ten years ago as an informal support group. In March 2014 it established a more formal footing becoming a registered Society within Singapore, with a website and Facebook profile. It has now appointed three staff and has its own office. BTSS has evolved due to the perseverance of an inspiring group of people led by President Melissa Lim and Vice-President Dr David Low. They are determined to raise awareness and understanding of brain tumours and their effects on patients and caregivers, and consequently increase support from the public, employers, media and government.

The loneliness of this difficult journey Like many of the brain tumour organisations around the world, BTSS has evolved through people’s individual experiences whether directly as a patient or as a caregiver to a loved one. Melissa was diagnosed with an acoustic neuroma in October 2003. Her 16-hour operation in February 2004 resulted in some physical challenges, most of which she has overcome. Melissa Lim said: “I understand first-hand the loneliness of this difficult journey. Yet, it is when we are most confused, discouraged and frightened that we need the comforting support of a friend who understands us simply because they have gone through the 98

Brain Tumour

Above: The Brainy Car Rally organising committee, volunteers and beneficiaries

same experience. This is what BTSS aspires to be, a friend and a family for patients and their families”. BTSS used IBTA’s International Brain Tumour Awareness Week to launch its own highly successful Awareness Day (Saturday 1 November 2014). The highlight was a Brainy Car Rally – a convoy of about 40 Lamborghinis and Ferraris which transported brain tumour patients, caregivers and survivors to key locations in Singapore, where they distributed BTSS grey balloons and information flyers. A simultaneous event was the exciting Brainy Joyride organised in collaboration with a group of Duke-NUS Graduate Medical School students. A fleet of supercars from the Brainy Car Rally made their way to KK Women’s and Children’s Hospital (KKWCH), where 25 paediatric brain tumour patients were taken for a “joyride”. The medical students also arranged an educational exhibition, public seminars, interactive game booths

and contests that highlighted paediatric brain tumours.

So how did BTSS come up with the idea of a supercar rally? Dr David Low said: “I was a junior doctor when I had a paediatric brain tumour patient. He had a love for toy cars and collected them, especially exotic car models, and it was his wish to ride in an exotic car. Unfortunately, at that time, I did not have the resources or contacts to make this happen he passed away before he could realize his dream. This has stuck with me ever since.” As luck would have it, early in 2014, David met Joshua, a Duke-NUS student, who had previously organised a car rally for autistic children. Coincidentally, during this period David was introduced to Melissa and together they came up with the idea of organising both a joyride for children and a car rally for adult brain tumour patients. Melissa said: “When I heard about the car rally, I was excited that we could bring


a day of joy and smiles to both paediatric and adult patients. I knew it would be an impactful way to highlight our cause. “BTSS member, Shawn Low, a brain tumour survivor, and the owner of Dream Drive was delighted to be able to share his love for cars with others like himself. The final piece of the jigsaw was completed with David Ong, Member of Parliament for Jurong who came on board as the BTSS Patron and agreed to formally launch the first Brain Tumour Awareness Day in Singapore.

Challenges ahead

Above: Melissa Lim, President of Brain Tumour Society (Singapore) - BTSS waves the chequered flag to start the rally. To Melissa’s right is BTSS’s patron David Ong MP.

There are a number of challenges facing BTSS in Singapore, one being the struggle to capture meaningful data. Currently there is no official record that gives statistics for brain tumour patients (benign and malignant). As a rough indication we see approximately 40 children, aged under 18, diagnosed every year at public hospitals. In the adult population, the latest statistical record, from 2007, shows more than 100 adults diagnosed with brain tumours. Both of these statistics, however, record malignant cases only. There is also much work to be done educating the public about the issues patients and caregivers face to improve the level of social support which they receive. An example would be helping brain tumour patients settle back to their schools and their workplaces. n

Above: Excited patients and families met the drivers of the snazzy sports cars

Above: Bunny Leach (left) of the Nicki Leach Foundation (USA) and Lanette Veres of the Gray Matters Foundation (USA) are great supporters of the IBTA. They are pictured at the Society for Above: And they’re off! A convoy of about 40 Lamborghinis and Ferraris transported brain tumour

Neuro-Oncology (SNO) conference in 2014 in

patients, caregivers and survivors to key locations in Singapore, where they distributed BTSS grey

Miami Beach, Florida, USA. n

balloons and information flyers.

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Taking control of your health through physical activity and exercise Chris Amidei, RN, PhD, FAAN, Advanced Practice Nurse University of Illinois, Chicago, USA LACK of physical activity is a health concern for brain tumor survivors. They have less physical activity than their age-matched counterparts with other types of cancer. The reasons for this are not clear. Some have suggested that medications are to blame. Some seizure medicines can make a person feel tired, while steroids can weaken muscles, especially the larger muscles of the thighs and shoulders. The tumor itself can cause weakness in the arms or legs, compounding lack of physical activity. Fatigue, a common concern for brain tumor survivors, can intensify lack of interest in exercise. Radiation and chemotherapy can contribute to fatigue. A recent thought is that the body makes chemicals in response to the tumor and its treatment that create fatigue and lack of interest in physical activity. Physical activity is important to a person’s overall health, well-being and quality of life. It can increase endurance, and in doing so, can help people to better tolerate the effects of treatment. Physical activity is also known to positively influence mood and outlook on life, and promotes more restful sleep as well as reducing stress and fatigue. It can also provide opportunities to socialise with others. There is also a connection between physical activity and cognitive function when active, the mind works better. Recent studies have shown that physical activity may be as effective as exercises that sharpen the mind in promoting better cognitive function. Interestingly, there is some recent evidence that physical activity may also extend survival and decrease risk for tumor recurrence. How much activity is enough? Health 100

Brain Tumour

Above: Advance Practice Nurse Chris Amidei

organisations recommend at least 30 minutes of physical activity or exercise three to five times a week, but most of us fall short of that. You can discuss ways to be physically active with your health care provider. Walking is one of the best ways to be active but remember to be safe. Walk with a partner if you are weak on one side, have seizures, or become easily confused. Swimming is a wonderful exercise, especially effective for those with joint aches and pains because it takes the weight off joints and allows one to exercise more freely. Similar to walking, consider the safety issues. Yoga is something else to consider; it not only provides physical activity but increases flexibility, promotes relaxation and relieves muscle tension. Think creatively about other ways you can be physically active. Do you have a hobby that allows you to be active, such as gardening, or working on your car? Do you like to dance around the house while listening to music and doing your chores? The key is to find an activity

that is enjoyable and active. A person can exercise, even if weak or paralyzed on one side, or unable to walk. A chair exercise program is advised for someone who cannot stand safely while exercising. There are simple devices that allow you to cycle your legs or arms while sitting in your chair at home. Exercise is not meant to be a solitary activity, so find a partner. This will not only keep you on track but they will also gain health benefits. Some individuals benefit from joining a health club or gym, or working with a personal trainer. You might also consider using an activity tracker. These are relatively inexpensive devices that you wear (or are now available on smart phones as an application) which help you keep track of your activity, and can even remind you when you’ve been inactive for some time. Motor deficits, weakness of the arms or legs, deserve some special attention. Different motor deficits can occur for different reasons throughout the course of a brain tumor illness. Such problems can wax and wane and affect your ability to function. Weakness can occur on one side of the body, or be more generalized. It can lead to imbalance and trouble walking, which can predispose a person to falls. It is helpful to periodically have an evaluation of muscle strength and overall function to identify changes early on and be able to institute preventive measures. Think of it as a periodic check up. The evaluation can be done by a physiatrist or physical therapist, and an exercise or therapy program can be recommended that they will supervise and which can be performed at home. Using these rehabilitative services can be helpful in preventing injuries, avoiding becoming wheelchair bound or bed bound, and


keeping you on your feet as long as possible. Maintenance of physical function can be of benefit even if gains in physical function are not obtained. Managing the effects of a brain tumor is critical to your well-being. Physical activity and exercise are one approach that you can use to take control of your health. Be thoughtful and creative about what to do, but get going! n

Tell us what’s happening in your part of the world. The monthly IBTA e-News reports on items of interest to the international brain tumour community. Contact chair@theibta.org

ABTA’s BT5K Breakthrough for Brain Tumors Run & Walk SANDY Abraham, Advancement Director, Marketing and Communications at the American Brain Tumor Association (ABTA) reports that: “During the 2014 calendar year, we had 11,200 participants who went nearly 35,000 miles in our BT5K’s.” The BT5K Breakthrough for Brain Tumors Run & Walk is the American Brain Tumor Association's national signature fundraising event, taking place in cities coast to coast. Participation allows the ABTA to provide vital brain tumor resources to patients and their families, fund promising research studies, and conduct nationwide brain tumor educational programs. Further details are available on www.abta.org

Above: ABTA BT5K Chicago participants 2014

Above: ABTA BT5K Los Angeles participants 2014

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Adolescents and Young Adults (AYA) with cancer - a unique group of patients Princess Margaret Cancer Centre in Toronto establishes dedicated programme Laura Mitchell, RN, MN, CON(C), Clinical Nurse Specialist Adolescent and Young Adult (AYA) Program, University of Toronto, Canada EVERY year in Canada 1300 patients aged 15-39 are diagnosed with cancer and referred to a specialist in Toronto. These adolescents and young adults (AYAs) with cancer are known to have unique information and service needs. These needs include but are not limited to: fertility, sexual health, school and work transitions, exercise, diet/nutrition, body image and social relationships. At the Princess Margaret Cancer Centre we understand that when these needs are not met, young people experience higher levels of distress and lower fertility preservation rates.

with it anyway. He also spoke about being an avid hockey player and now he did not have the strength to walk down the street. His most recent concern was about a first appointment with the palliative care team and what this meant. This patient’s experiences aren’t specific to him and are in fact common among young patients with cancer.

The Princess Margaret AYA program – how it works and works well

Above: Laura Mitchell presenting at the AYA Program

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Supporting AYA cancer patients and providers

at the Princess Margaret Hospital’s annual AYA

I began my position as an Advanced Practice Nurse at the Centre in the fall of 2013. Although the program had not yet been fully developed, our project team - including a medical director, program manager and dedicated psychologist – strongly believed that an AYA program would optimize the cancer care experience for our young oncology patient population. In the initial stages of program development, our priority was to increase awareness about unique AYA needs and learn about how an AYA program could best support patients and providers. During this time, I learned just how devastating and disruptive a cancer diagnosis is for a young person. I remember meeting a patient who was undergoing treatment for an astrocytoma. He had just finished his

Week (30th March – 2nd April 2015).

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lectureship which kicked off National AYA Awareness

degree and was starting a great job when he was diagnosed. He and his girlfriend had moved in together and were excited to enjoy the city. Cancer ruined all of his plans. He could no longer work because of the symptoms from his disease and the demands of the treatment process. His inability to work created a lot of financial stress as there was rent and medications to pay for. There were piles of paperwork to do to apply for government support and he needed to complete them, even when he was feeling so unwell. He remembered an emergency department physician showing up in his hospital room advising him to bank sperm. He didn’t really understand why this was important to do, but luckily went ahead

Our AYA program at Princess Margaret Cancer Centre was piloted in the spring of 2014 and has since expanded to other disease sites including the central nervous system (CNS). The CNS cancer site is highly populated with young patients. The program has been made accessible to AYAs at all stages in their cancer journey and consists of four key components: clinical care; healthcare provider education; infrastructure and research. The clinical care is delivered by me as the program’s Advanced Practice Nurse. Patients attend an AYA consultation where they are assessed for their unique needs. Education and navigation around hospital and community services are provided. Coping support is also offered and referrals are made to specialty psychosocial services for those with high levels of distress. Follow-up appointments are available as needed and all care interventions are promptly communicated to the primary oncology team. Healthcare provider education has been delivered to CNS nursing staff working in clinics and inpatient units.


intern is developing a website dedicated to AYA resources in Ontario and building a young adult community by holding social events at Princess Margaret.

Feedback and next steps

Above: AYA patients, friends, family and members from the Foundation. Paralympian Tyler McGregor is second from the left.

Baseline surveys were used to assess nurses’ education needs on AYA issues. Three education sessions have been developed for nurses: fertility risks and preservation options for patients undergoing treatment for a CNS cancer; sexual health issues for patients with brain tumours; and AYA community programs. Physician education has been provided to medical trainees caring for the CNS young adult patient population. Resources and tools have also been created to help build infrastructure within the AYA program. A young adult screening

tool has been implemented in the clinics and inpatient units. The tool asks questions around common AYA needs. Its purpose is to assist healthcare providers in addressing concerns in fast-paced clinical settings. AYA resource kits are available and include pamphlets on relevant hospital and community programs. A partnership has been built with one of our local oncofertility clinics and fertility care pathways have been developed. Guidelines have been developed to increase access to fertility preservation information and services. Our program’s

Anecdotal feedback from patients and providers has been extremely positive and thankful for this program. We are hoping to obtain more formal feedback through a program evaluation study and a database at our institution that has been created to collect AYA data. Some next steps for the program include the implementation of patient education tools on fertility preservation, creation of a smartphone app to help peer-to-peer connection, and the development of an AYA Fellowship Program for medical trainees. In summary, programming dedicated to the care of adolescents and young adults with cancer must be prioritized in oncology care centres. Our team’s hope is to collaborate with other institutions, nationally and internationally, to help support initiatives that address young patients with these unique care needs at all phases in their cancer journey. n

To connect with our program, please feel free to email us at aya@uhn.ca. Resources: http://www.ayaprincessmargaret.ca/ http://www.uhn.ca/PrincessMargaret/ PatientsFamilies/Clinics_Tests/ Adolescent_Young_Adult_Oncology https://cancerkn.com/oncofertilityreferral-network

Above: AYA patient and Canadian paralympian Tyler McGregor participating in the ‘Look Good Feel Better’

The IBTA has contacts in 111 countries throughout the world to whom it makes available its free monthly e-News and its free annual magazine, Brain Tumour

scarf tying workshop at Princess Margaret Hospital in Toronto.

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The brains behind a Twitter success How two brain tumor survivors are connecting with patients via a hashtag Catherine Blotner and Liz Salmi United States

IF it were not for Twitter, we would have never met. In July 2008, Liz was diagnosed with a grade 2 astrocytoma at the age of 29. Immediately after diagnosis, and throughout treatment, she blogged about her experience and became a vocal advocate for the brain tumor community on social media. In September 2012, Catherine celebrated the first day of her senior year of high school by having an awake brain surgery over 2,000 miles from her home state of Michigan. After waking up in the intensive care unit, Catherine began searching the Internet for other people with a low-grade astrocytoma. We can’t remember the first time we tweeted at each other, but we can remember how we were able to find each other among Twitter’s 232 million users: by a hashtag.

Above: Catherine Blotner is a college sophomore

Above: Liz Salmi is a healthcare communications

at Barrett, The Honors College at Arizona State

strategist from Sacramento, CA. She is the

University, where she studies Family and Human

California lead public policy advocate for the

Development. When she’s not studying, Catherine

National Brain Tumor Society, and is an aspiring

can be found talking to students about their

weightlifter.

passions, as a photojournalist.

Twitter tutorial If you are a Twitter novice, hashtag nomenclature might seem silly. However, hashtags prove quite useful for tagging and aggregating topics when you only have 140 characters to compose a tweet. #BTSM stands for “brain tumor social media.” The #BTSM hashtag was inspired by what was happening with larger patient populations already connecting through Twitter such as breast cancer social media aka #BCSM, and an even larger community of healthcare professionals using Twitter (see: health care social media aka #HCSM). The brain tumor hashtag emerged somewhat organically and became a standard, albeit 104

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random, way brain tumor patients could connect with each other among a sea of tweets. With just one percent of all cancers being a brain tumour, it is hard for patients to find traditional and specific support groups in our local communities. Depending on where you live, there may be no support mechanisms whatsoever.

On social media - people just like us After her craniotomy, Catherine, like many other people with a brain tumour, was hungry to connect with other people just like her so she turned to social media. She wanted to know if anyone else had

food cravings while they were on steroids. Answer: yes. She wanted to know if her skull would ever feel normal again. Answer: not exactly. And she wanted to know if her scar would ever go away. Answer: nope. Through #BTSM, we are able to find other people just like us - people who are dealing with the same issues: aching scars, chemo brain, and difficulty acclimating to anti-seizure medications. In May 2013, we kicked off the first #BTSM tweet chat. The “tweet chat” concept was inspired by leaders from the


breast cancer community who host onehour chat room-style hangouts each week. #BTSM meets on the first Sunday of each month at 7 pm US Pacific Standard Time (PST). The chats are organized events often featuring guest moderators from the healthcare community such as psychologists, radiation oncologists, neurosurgeons or – from the world of brain tumor advocacy - policy makers, nonprofit organizations, caregivers. Tweet chat participants tell us they learn more about their brain tumors during a one hour chat than they do from their doctor’s office over an entire year (which can be a little scary!). A few participants have told us that #BTSM is the best thing to ever happen to them as a patient due to the sense of community they get from the group. While tweet chats only take place once a month, the hashtag can be used and searched any day of the week as a way to communicate with other members in the community. In a report released at the 2014 American Society of Clinical

Oncology (ASCO) annual meeting, #BTSM was recognized as the second most-used disease related hashtag. The most used hashtag was #BCSM.

Life after a brain tumor diagnosis Instead of living in the shadows of our disease, our goal is to show other people with brain tumors that they can thrive even after diagnosis. Catherine is consistently making the Dean’s List, a category of students in a college or

university who achieve high grades during their studies. Liz is training for a weightlifting competition next year. Both of us have used #BTSM as an opportunity to meet other survivors, share our stories, learn their stories, and when geography allows, meet other survivors in person. As of the writing of this story, we have never been in the same room at the same time. But, we know each other’s faces, voices, hopes, dreams and fears. And that is thanks to a hashtag. Our hope is that other people in the brain tumor community will join us and add their voices to the #BTSM. You have a life after diagnosis. Go tweet about it. n

#BTSM website: www.btsmcommunity.org @Cblotner_ www.platedlife.wordpress.com @TheLizArmy www.thelizarmy.com"

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Research | Awareness | Support

Together we will defeat brain tumours

thebraintumourcharity.org | +44 (0)1252 749990 © The Brain Tumour Charity 2015. Registered Charity no. 1150054 (England and Wales) SC045081 (Scotland)

In Canada, every day 27 people are diagnosed with a brain tumour. At Brain Tumour Foundation of Canada, you can: • Connect with survivors and caregivers so you’re not alone • Attend learning events and find resources to better understand a brain tumour diagnosis • Advocate to change practices and policies that are not inclusive of the brain tumour community • Fund the best brain tumour research possible

www.braintumour.ca 1.800.265.5106 Find us on:

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Reproduced from Brain Tumour magazine published by the International Brain Tumour Alliance (IBTA) © 2015

Brain tumour patient and carer organisations around the world* (*The IBTA cannot be held responsible for the content of other organisations’ websites included in the list below.) n Accelerate Brain Cancer Cure

n Andrew McCartney Trust Fund

n Astro Brain Tumour Fund

(United States)

(United Kingdom)

(United Kingdom)

Accelerate Brain Cancer Cure has a singular focus -

Funds scientific and medical research into the causes

A UK organisation offering information, inspiration and

to hasten the discovery of a cure for brain cancer.

of brain tumours, and builds public awareness of the

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

www.abc2.org

challenges of this disease.

www.astrofund.org.uk

www.andrewmccartneyphotos.co.uk n ACT Brain Tumour Network

n Australian Pituitary Foundation

(Australia)

n Angels Among Us

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

The ACT BT support network meets on the 4th Sunday

(United States)

have experienced pituitary gland conditions. We promote

of the month at Woden Southern Cross Club, Canberra.

The Angels Among Us 5K and Family Fun Walk

awareness and disseminate information among the

Convened by Susan Pitt and MaryAnne Rosier under the

is a celebration of life, strength, courage and

medical community, public, pituitary patients and

auspices of Brain Tumour Alliance Australia (BTAA).

commitment. This volunteer organization was

their families.

Email secretary@btaa.org.au or call Susan Pitt on 0404255156 for more information. Freecall 1800 857 221 (free from landlines in Australia)

established to support the mission of hope at the

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

Preston Robert Tisch Brain Tumor Center at Duke (Durham NC, USA).

n B-Strong (Canada)

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

B-Strong is located in Ontario, Canada and raises funds for

This foundation was created to help fund pediatric brain

n Anna’s Hope

http://www.bstrong.ca

tumor research as well as provide financial assistance to

(United Kingdom)

families who need help caring for their sick child.

Anna’s Hope is a charity dedicated to giving hope

n Ben and Catherine Ivy Foundation

www.addisfaithfoundation.org

to children and young people diagnosed with a

(United States)

brain tumour. It was inspired by Anna Olivia Hughes

The objective of the US-based Ben and Catherine Ivy

n Adult Brain Cancer Support Association

who tragically died from a brain tumour aged only

Foundation is to fund research that will offer brain tumor

(Australia)

three years and eight months and was set up by

patients a wide choice of effective treatments that provide

The ABC Support Association is located in South Australia

Anna’s parents, Rob and Carole Hughes and her five

for a long term, high quality life.

and is focussed on giving support, encouragement, help

Godparents in 2006.

www.ivyfoundation.org

and guidance to adults diagnosed with brain cancer, their

www.annashope.co.uk

n Addi’s Faith Foundation

n Benny’s World

families, friends and carers.

Contact: Andy Stokes, adultbraincancersa@gmail.com

vital research into brain tumours. They also organise an annual B-Strong walk.

(United States)

n ARTC Sud

(United States)

(France)

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

n Adult Ependymoma

Ce site s’adresse à tous ceux qui souhaitent

World is a 501(c)(3) non-profit foundation established

(Web-based)

s’informer sur les tumeurs cérébrales cancéreuses

to fund research to find a cure for pediatric brain stem

A website dealing primarily with adult ependymomas.

et sur la recherche en neuro-oncologie et à ceux qui

tumors, specifically targeting diffuse intrinsic pontine

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

désirent faire progresser cette recherche.

glioma (DIPG).

www.artcsud.fr

http://www.bennysworld.org/

(Turkey)

into childhood brain tumours.

n Association Española de Afectados por Tumores Cerebrales ASATE

www.alisdream.co.uk

(Spain)

www.beyintumoru.org

n Ali's Dream (United Kingdom) A UK-based charity established to raise funds for research

n Beyin Tumori Tedavisi Turkish brain tumour support group.

This organisation seeks to improve the quality of life

n Alinoe

and welfare of people with a brain tumour.

n Brad Kaminsky Foundation

(France)

http://www.asate.es/

(United States)

Alinoe (Association Lilloise de Neuro-Oncologie) is a

The Brad Kaminsky Foundation seeks to raise awareness

patient-oriented organisation providing information and

n Association Léa Princesse Eternelle

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

support to brain tumor patients and their families in

(France)

dedicated to providing support and resources to those

the Lille area (north of France)

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

affected by this disease.

www.alinoe.asso.fr

de 5 ans des suites d’une tumeur cérébrale récidivante :

www.tbkf.org

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

n American Brain Tumor Association

deux années de maladie, nous gardons tous dans

n Brain Candy Project

(ABTA - United States)

nos pensées l’image d’une petite fille souriante,

(United States)

The American Brain Tumor Association was the first and is

joueuse, courageuse et généreuse. Afin de poursuivre

The Brain Candy Project aims to support the needs of

now the only national organization committed to funding

son combat contre la maladie, nous, parents de

parents/guardians living in the hospital with their children

brain tumor research and providing support and education

Léa, avons décidé de créer l’association «Léa

who are recovering from brain tumours and other

programs for all tumor types and all age groups.

Princesse Eternelle».

brain traumas.

www.abta.org

http://leapourlavie.free.fr/

www.braincandyproject.org Brain Tumour

107


n b.r.a.i.n.child

n Brain Tumor Foundation

n Brain Tumour Foundation of Canada

(Canada)

(United States)

The Brain Tumour Foundation of Canada is the major non-

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

The Brain Tumor Foundation (BTF) is a non-profit

government brain tumour organisation in Canada.

who have the common experience of caring for a child with

organisation that guides and supports patients, families

www.braintumour.ca

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

and caregivers touched by a brain tumor. BTF also raises

organization providing support, education,

awareness about the need for the early detection of brain

n Brain Tumour Foundation of India

and research funding.

tumours.

The Brain Tumour Foundation of India is a charity concerned

http://www.sickkids.ca/Brainchild/index.html

www.braintumorfoundation.org

with improving the care and treatment available to people

n BrainLife

n Brain Tumor Foundation for Children

partnership with other organisations to develop and support

(Web-based)

(United States)

services for people with brain tumours.

BrainLife collects and offers to brain tumor patients,

The Brain Tumor Foundation for Children Inc is a Georgia

www.braintumourindia.org

caregivers and medical/health professionals,

(US) based support, information, and fund-raising

references to the latest published medical sources in

organisation for children with brain tumors.

n Brain Tumour Ireland

the field of brain (and other CNS) tumor research and

www.braintumorkids.org

Brain Tumour Ireland raises awareness, provides information

with brain tumours and their families. They work in

treatment. Information is from peer-reviewed journals

and support, and promotes and funds medical research.

and medical databases. Some meeting proceedings

n Brain Tumor Fund for the Carolinas

are included too. The sources (abstracts, references

(United States)

and full-text articles) are republished with their

The Brain Tumor Fund for the Carolinas (BTFC), is a not-for-profit

n Brain Tumour Research

original contents.

organization founded in 2003 by Charlotte neurosurgeon,

(United Kingdom)

www.brainlife.org

Dr. Tony Asher and retired Bank of America executive, Jim

Brain Tumour Research specifically funds brain tumour

Palermo. The Brain Tumor Fund for the Carolinas is dedicated

research at UK centres to accelerate progress and improve

n Brain and Spine Foundation (United Kingdom)

to increasing public awareness of the impact of brain tumors

patient treatments and outcomes

and to providing support for the development of treatment

www.braintumourresearch.org

The (UK) Brain and Spine Foundation seeks to

strategies and cooperative biomedical research related to brain

develop research, education and information

tumors in the Charlotte region.

programmes aimed at improving the prevention,

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

treatment and care of people affected by disorders

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

n Brain Tumour Research and Support Across Yorkshire (United Kingdom)

of the brain and spine. The Foundation also seeks to

n Brain Tumour Action

Brain Tumour Research and Support across Yorkshire

stimulate a greater allocation of resources across

(Scotland)

(formerly Andrea’s Gift) aims to provide a network of

all neurological disorders.

A voluntary group based in Scotland which concentrates on

support across Yorkshire for brain tumour patients and

www.brainandspine.org.uk

support, counselling, education, information and research.

their families.

www.braintumouraction.org.uk

http://www.btrs.org.uk

(United States)

n Brain Tumour AhoyHoy

n Brain Tumour Society

The Brain Science Foundation is a (US) nonprofit

(Australia)

(Singapore)

organization founded by Steven and Kathleen

Brain Tumour AhoyHoy's mission is to provide information,

Singapore – BTS provides moral and resource support, as

Haley in 2002 based on a realization that little is

support and awareness for patients, friends and family who

well as patient education, for brain tumour patients and

known in the medical world about meningioma

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

their caregivers in Singapore. We also advocate for better

and other primary brain tumors and a desire to

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

patient information and welfare by seeking to raise

fast-forward research on them.

can laugh, cry and just be yourself.

public awareness of brain tumours and the support

www.brainsciencefoundation.org

http://www.braintumourahoyhoy.org/

that patients need.

n Brains Together for a Cure

n Brain Tumour Alliance Australia (BTAA)

(United States)

Brain Tumour Alliance Australia (BTAA) is the only national

Our mission is to promote awareness of brain tumors

brain tumour patient and caregiver organisation in

n Brain Tumour Support Group Cancer Council Queensland

and the need for effective treatments.

Australia. It was established in late 2008 by a group of

(Australia)

www.brainstogetherforacure.org

brain tumour patients and current and former caregivers.

This brain tumour support service provides information

While welcoming the advice and input of specialists, BTAA

about brain tumours and treatments; referral to support

n Brain Tumor Action Network

seeks to represent the brain tumour community from the

and rehabilitation services as well as practical and

(United States)

viewpoint of the patient, family and caregiver.

financial assistance; and regular meetings that give

The Brain Tumor Action Network is a US-based

www.btaa.org.au

opportunities to meet other people dealing with a brain

n Brain Science Foundation

mgrbtsg@yahoo.com

not-for-profit organisation raising awareness in the

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tumour and hear health professionals discuss topics

general public about brain tumors and educating and

n Brain Tumour Association Western Australia

of interest.

empowering brain tumor survivors, their families

The Brain Tumour Association (Western Australia) is a

and friends.

support group for patients and caregivers.

http://www.cancerqld.org.au/page/need_support/ brain_tumour_support_service/

http://btan.org

braintumourwa@hotmail.com

n Brain Tumor Awareness Organization

n Brain Tumour Foundation

n Brain Tumour Support (United Kingdom)

(United States)

(Cayman Islands)

Brain Tumour Support is a UK brain tumour charity which

The Brain Tumor Awareness Organization is an on-line

“The Forgotten”

offers help to people whose lives have been affected by

resource for raising brain tumor awareness and

This Foundation was formed to help and support people

a brain tumour, by providing a network of support for the

gaining support.

affected by brain tumours and aneurisms, and their families.

whole journey.

www.braintumorawareness.org

http://www.btfcaymanislands.com

www.braintumoursupport.co.uk

Brain Tumour


n Brain Tumour Support Group - St Thomas’ Hospital, London

n BT Survivor group

n Childhood Brain Tumor Foundation

(Web-based)

(United States)

(United Kingdom)

A site dedicated to discussing survivorship, treatment

The Childhood Brain Tumor Foundation of Maryland

Everyone is welcome to join this brain tumour support

options available now and those options on the horizon

“supports and funds basic science or clinical research for

group in London to be held at the Dimbleby Cancer

that show promise.

childhood brain tumors”.

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

www.btsurvivor.com

www.childhoodbraintumor.org

with a brain tumour.

n California Brain Tumor Association (United States)

n Childrens Brain Tumor Foundation

www.guysandstthomas.nhs.uk/our-services/ cancer/cancer-types/brain/patients.aspx

The California Brain Tumor Association is dedicated to

(United States)

advancing brain cancer research efforts, employing the

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

precautionary principle, outreach, and education.

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

http://www.cabta.org/

children with brain and spinal cord tumors …”.

aimed at patients, families and friends of those diagnosed

n Brainstrust

www.cbtf.org

(United Kingdom) community, which supports thousands of people

n Central Brain Tumor Registry of the United States

n Chris Elliott Fund/EndBrainCancer Initiative

across the country who are affected by brain cancer.

The Central Brain Tumor Registry of the United States,

(United States)

Brainstrust works to help patients and carers regain

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

The Chris Elliott Fund is a non-profit organization that raises

control, and be confident that they are working

providing a resource for gathering and disseminating current

funds specifically aimed at ending brain cancer through

towards the best outcome for their situation.

epidemiologic data on all primary brain tumors, benign

education, awareness, advocacy and research.

www.brainstrust.org.uk

and malignant, for the purposes of accurately describing

www.chriselliottfund.org

Brainstrust is a UK based brain cancer charity and a

their incidence and survival patterns, evaluating diagnosis

n Brain Tumour Foundation South Africa

and treatment, facilitating etiologic studies, establishing

n Clowns in the Sky

BTFSA is a charity trust that has been set up to assist

awareness of the disease, and ultimately, for the prevention

(United Kingdom)

patients, carers and the public with information on brain

of all brain tumors.

Clowns in the Sky is a registered UK charity dedicated to the

tumours, medical treatments, doctors and hospitals in

http://www.cbtrus.org/

research and treatment of childhood brain tumours and to the welfare of affected children and their families.

South Africa.

http://kohlerprojects.blogspot.co.uk

n Central New Jersey Brain Tumor Support Group – CNJBTSG (United States)

http://www.clownsinthesky.org/

n Brainwaves Brain Tumour Support Group

CNJBTSG (United States) Meets in North Plainfield,

n Croatian Brain Tumor Association - Glia

(United Kingdom)

New Jersey..

Glia aims to bring together not only those being treated

Brainwaves offers the opportunity to meet other people

www.njbt.org/startCNJBTSG.cfm

for a brain tumour, but all those who are involved in their treatment and recovery. Glia’s main objective is informing

with similar experiences and to find out information about all the issues relating to brain tumours.

n CHANCE - Children AgaiNst CancEr

patients and their families about the disease, and

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

(Lebanon)

getting the best treatment taking into account the current

CHANCE (CHildren AgaiNst CancEr) is a Lebanese

situation in Croatia.

n Brainwaves NI (Northern Ireland)

association whose mission is to help Lebanese children

www.glia.hr

Brainwaves NI is a Northern Ireland based charity

with cancer or blood disorders receive the best chance for

dedicated to providing support and information to

cure and accept their disease.

n Cure Brain Cancer Foundation

those people affected by a brain tumour.

http://www.beirut.com/l/25407

(Australia)

www.brainwaves-ni.org

Cure Brain Cancer Foundation is the largest dedicated funder of brain cancer research in Australia. Partnering

n Brian Bedell 2 Young Foundation (United States)

n Collaborative Ependymoma Research Network (CERN) Foundation

The 2 Young Foundation was founded in 2004 by

(United States)

developing a national agenda and influencing the global

Brian Bedell and continues to grow each year in

The CERN Foundation is a dedicated group of scientists

agenda for brain cancer research.

his honor. 2YF is a non-proft (501c3) charitable

working in concert to develop new treatments and improve

http://www.curebraincancer.org.au

organization that is dedicated to caring for families

the care of all patients, ultimately leading to a cure for

and patients affected by brain tumours, connecting

ependymoma.

n Cyprus Brain Tumour Association (CBTA)

communities to generate public awareness, and

http://cern-foundation.org

The CBTA is an organisation for patients and families. This is a link to the email address for one of its contacts.

committing funds to further research in curing this disease.

http://www.2yf.org

with the research and brain cancer communities, they are

n Charles Warren Brain Tumor Awareness Foundation

https://www.facebook.com/cbta.cyprus

(United States)

n Deutsche Hirntumorhilfe eV

n British Acoustic Neuroma Association - BANA

The Charles Warren Brain Tumor Awareness Foundation,

(Germany)

(United Kingdom)

based in Georgia, USA, seeks to “significantly raise

A non-profit, German-based independent organisation,

BANA is organised and administered by people affected by

awareness of the disease of brain tumors so that a cure

which raises funds for the advancement of neuro-

acoustic neuroma; is a registered charity and exists for

can be found more quickly”.

oncological research and the improvement of medical

mutual support, information exchange and listening.

www.charleswarrenfoundation.org

health care for brain tumour patients.

www.hirntumorhilfe.de

www.bana-uk.com n Charlie's Challenge n BT Buddies

(United Kingdom)

n Dr Marnie Rose Foundation

(United Kingdom)

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

(United States)

A UK group offering information, inspiration and hope to all

money to finance urgently needed research into children’s

The Dr Marnie Rose Foundation funds brain tumour

those living with a high-grade brain tumour.

brain tumours.

research at MD Anderson in Houston, Texas.

www.btbuddies.org.uk

www.charlieschallenge.com

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

109


n Ed Evans Foundation

n Fondo Alicia Pueyo - The Alicia Pueyo Fund

n Hersentumor.nl

(United Kingdom)

(Spain)

(The Netherlands)

The Ed Evans Foundation, in memory of 27 year old Ed

This Spanish organisation was created with the mission

A patient-oriented organisation in the Netherlands

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

to promote and support research on childhood brainstem

whose aim is to prevent and cure brain tumours.

and raises funds for cancer and brain tumour charities.

tumors, in order to develop new treatments and drugs

www.hersentumor.nl

www.edevansfoundation.co.uk

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

n Ellie’s Fund - Brain Tumour Trust

terrible disease.

n Hjernesvulstforeningen

www.fondoaliciapueyo.org

(Norway)

(United Kingdom)

This is HsF which is associated with the Norwegian

Ellie's Fund - Brain Tumour Trust has been founded

n GentleGiant

Cancer Society.

to help families living in East Anglia (UK) who have

(United Kingdom)

www.hjernesvulst.no

a child with cancer or a brain tumour by providing

GentleGiant UK is a website devoted to pituitary tumours.

financial support.

www.gentlegiant.co.uk

www.elliesfund.com

n HjernetumorForeningen (Denmark)

n Gerry and Nancy Pencer Brain Tumor Centre

We are an association of patients who have and

n Emory Brain Tumor Support Group

(Canada)

have had brain tumor, and their relatives. Here

(United States)

The Gerry and Nancy Pencer Brain Tumor Centre is

you have the opportunity to exchange experiences

The Emory Brain Tumor Support Group (Georgia, USA)

dedicated to improving the lives of people living with

and get support from others who are in

provides an opportunity for information-sharing

brain tumours.

similar situation.

and support among patients diagnosed with a

http://www.theprincessmargaret.ca/en/ PatientsFamilies/ClinicsAndCentres/BrainClinic/ ages/about-us.aspx

http://www.cancer.dk/ hjernetumorforeningen/

n GFME

(Italy)

n Ependyparents online support group

(France)

Il Fondo di Gio ONLUS is an Italian brain tumour charity

(United States)

Glioblastoma Fundation Michèle Esnault (GFME) is a French-

named in honour of Gio, the young son of Francesca

The Ependyparents online support group is a

speaking group for brain tumour patients.

Scropetta, who passed away from a brain tumour.

private email list for parents of children with

http://gfme.free.fr/

Francesca may be contacted at ilfondodigio@alice.it

brain tumor, be it malignant, benign or metastatic.

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

n Il Fondo di Gio ONLUS

www.ilfondodigio.it

Ependymoma. We are a group of parents looking for knowledge and information on behalf of our

n Gray Matters Foundation

children who are too young to make decisions.

(United States)

n IRENE Onlus

Group communication is by a private email list

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

(Italy)

hosted by T.H.E. BRAIN TRUST, a 501(c)(3) nonprofit

whose mission is to support and empower people

L'associazione IRENE Onlus è stata fondata alcuni

organization specializing in internet based and

impacted by brain tumors through outreach, awareness

anni fa per iniziativa di pazienti e familiari di

patient oriented brain tumor support groups. An

and assistance programs.

persone affette da tumori cerebrali. Obiettivo

on-line support group facilitated by Bruce Blount.

www.graymattersfoundation.com

dell'Associazione IRENE è quello di aiutare le persone

http://braintrust.org/groups/ependyparents/

che hanno ricevuto una diagnosi di tumore cerebrale

n Grey Matters

e i loro familiari, ad affrontare i problemi sia di natura

n Epidermoid Brain Tumor Society

(Australia)

sanitaria che psicologica e sociale che questa

The Epidermoid Brain Tumor Society provides mutual

A support group for those living with a benign and low

diagnosi comporta....

support, information exchange and a connection with

grade brain tumour. Grey Matters is affiliated with Cancer

http://www.associazioneirene.it/

others in similar circumstances by support

Council Victoria and associated with Melbourne Hospitals

group interaction.

(including Royal Melbourne and The Austin).

n The Irish Brain Tumour Support Group

http://epidermoidbraintumorsociety.org/

www.greymatters.org.au

The Irish Brain Tumour Support Group was founded

n Fitzy's 5 km Run/Walk

n Headcase

and their families with the objective of providing

(United States)

(United Kingdom)

community-based support to people diagnosed

This annual run/walk raises funds for brain tumor

Headcase raises funds to provide research to find a cure

with brain tumours and their families. In April 2002,

research and support activities in honour of 20-year-old

for the most common and aggressive type of adult brain

a second brain tummour support group was

Lauren M Fitzgerald who passed away in 2005.

tumour called a Glioblastoma Multiforme or GBM.

launched in Cork City and in 2006 a third one was

Funds are administered through the Berks County

www.headcase.org.uk

set up in Galway.

in May 1991 in Dublin by a small group of patients

www.irishbraintumoursupport.org

Community Foundation.

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

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

n Italia - Glioblastoma Multiforme cancro al cervello

n Florida Brain Tumor Association

organization dedicated to raising awareness and funding in

(Web-based)

(United States)

the fight against brain cancer.

Italian glioblastoma Facebook website.

Our mission is to provide hope, support and education

www.headforthecure.or

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

(United States)

to brain tumor survivors, their families and friends; to

110

conquer brain tumors by funding research into their

n Healing Exchange Brain Trust

causes and cures; and to enrich the quality of life of

(United States)

n Japan Pediatric Brain Tumor Network

those touched by brain tumors.

Provides support services for people affected by brain

The website for the Japan Pediatric Brain Tumor Network is

http://www.floridabraintumor.com/ homepage.htm

tumors and related conditions.

in Japanese.

http://braintrust.org

www2.pbtn.jp

Brain Tumour


n Jeffrey Thomas Hayden Foundation

n Legacy Brain Foundation

(United States)

(United States)

n Meagan's Walk: Creating a Circle of Hope

The Jeffrey Thomas Hayden Foundation is a registered non-

Our Mission is to support patients with brain or

(Canada)

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

spinal cord tumors in their communities through

Meagan’s Walk, held on Mother’s Day, raises awareness

kids affected by cancer.

public awareness, education, grants and services;

about paediatric brain tumours and funds for research.

www.jthf.org/default.asp

creating a better quality of life for patients and

Participants conclude the walk with a circle around

their families.

SickKids Hospital, Toronto, Canada.

http://www.legacybrainfoundation.com/

www.meaganswalk.com

The Joe Di Palma Brain Tumor & Pediatrics Foundation is

n Levi’s Star

n Meningioma Mommas

dedicated to raising money for charities that are focused

(United Kingdom)

(United States)

on helping adults and children with brain tumors. The

Levi’s Star, in memory of Levi Ringer, is a UK charitable

Meningioma Mommas is a 24/7 online support

Foundation is based in Vaughan, Ontario.

organisation which aims to support children with brain

group for all those affected by meningioma brain

www.joedipalmafoundation.com

tumours and other serious neurological conditions.

tumors. The non-profit organization is also

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

committed to raising funds for meningioma

n Joe di Palma Brain Tumor Foundation (Canada)

n Just One More Day (United States) Just One More Day is committed to providing information and

specific research.

n Making Headway

www.meningiomamommas.org

(United States)

support for families affected by diffuse intrinsic pontine glioma.

Making Headway Foundation Inc. is a US

n Meningioma UK

www.justonemoreday.org

(Chappaqua, NY) based not-for-profit organization

The only UK organisation for support and information

dedicated to the care, comfort, and cure of children

for patients with meningioma tumours of the brain and

n Kartu Lengviau

with brain and spinal cord tumors.

spine. Thirty per cent of all primary brain tumours are

(Lithuania)

www.makingheadway.org

meningioma tumours.

www.meningiomauk.org

The only Internet page and support group for brain tumour patients and their carers in Lithuania.

n Mark Linder Walk for the Mind

www.kartulengviau.lt/joomla/pradzia.html

(United States)

n Michael G Belz Foundation

Mark’s goal was to create a place where brain

(United States)

n Katie McKerracher Trust

tumor survivors and those still fighting the battle

This US group seeks to create hope and helping to live

(United Kingdom)

can come and support one another in this battle…

and celebrate life after diagnosis. The organisation offers

Katie’s Trust wants to help children with a diffuse pontine

Mark founded the Walk for the Mind in 2003.

emotional support, provides resources, educates and

glioma by supporting patients and parents with finance and

The Walk is a way to unite those individuals

promotes awareness of research and treatments.

advice, providing access to healing/alternative therapy and

and their families as well as to raise funds

http://mgbf.org

investigating/supporting research. The Trust also provides

to support brain tumor research in hopes to

some financial assistance to dancers from the Scottish

find a cure.

Borders studying dance in higher education.

http://www.marklinderwalkforthemind.org/

www.katiemckerrachertrust.co.uk

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

n mASS Kickers

The Michael Quinlan Brain Tumor Foundation is dedicated

n Kevin J Mullin Memorial Fund for Brain Tumor Research (United States)

(United States)

to empowering those persons who have been affected by

The Kevin J. Mullin Memorial Fund for Brain Tumor Research,

and motivation to all newly-diagnosed patients,

based in the USA (Lancaster, Ohio), conducts an annual 5 km

family, and friends affected by tumors or cancer. MKF

run/walk from which the proceeds go to brain tumor research.

serves this mission through its website, fund-raising,

n Monmouth and Ocean County Brain Tumor Support Group

www.lemonhead.org/Home.aspx

and select events throughout the year. Founded by

(United States)

brain tumor patient Dr Eric Galvez.

The Monmouth and Ocean County Brain Tumor Support

http://www.masskickers.org/

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

n Kinderkrebs Schweiz

mAss Kickers Foundation (MKF) is a 501(c)(3)

brain tumors.

non-profit organization, which provides support

www.biak.us

group.

(Switzerland)

www.njbt.org/startMOCBTSG.cfm

of self-help organisations and was founded in 1987 by

n Matthew Larson Pediatric Brain Tumor Research Foundation

concord parents, then known as the Swiss Association

(United States)

for Children with Cancer. Since then, the Children’s Cancer

The Matthew Larson Pediatric Brain Tumor

n Musella Foundation for Brain Tumor Research and Information, Inc.

Aid Switzerland has been committed to the needs and

Research Foundation seeks to raise awareness

(United States and Web-based)

interests of affected children and their families, including

and funds needed to overcome pediatric brain

Regarded as one of the most comprehensive brain

those whose lives have been touched by a paediatric

tumors and to help the children and families

tumor websites in the English-speaking language.

brain tumour.

affected by them.

www.virtualtrials.com

http://www.kinderkrebshilfe.ch

www.ironmatt.org

n Kortney Rose Foundation

(United Kingdom)

(United States)

n Matthew’s Miles (United States)

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

Our mission is to raise brain tumor awareness in

with a brain tumour by way of giving them financial

that is dedicated to raising funds to support research and

the general public and to raise money for pediatric

support and providing the latest information about

education related to the treatment and cure of pediatric

brain tumor research in hope of finding a cure for

brain tumours.

brain tumors.

this devastating illness.

http://thekortneyrosefoundation.org/

http://www.matthewsmiles.org/

http://www.naseemsmanxbraintumour charity.co.uk/

The Children’s Cancer Aid Switzerland is an association

n Naseem’s Manx Brain Tumour Charity Our aim is to support Island residents who are suffering

Brain Tumour

111


(United States)

n Pediatric Low Grade Astrocytoma Foundation

(United States)

The National Brain Tumor Society is committed to finding

(United States)

Established in 1995, the SBTF is devoted to funding a

better treatments, and ultimately a cure, for people living

The US-based Pediatric Low Grade Astrocytoma

cure for brain tumors. Located in Atlanta, Georgia, this

with a brain tumor today and anyone who will be diagnosed

Association (PLGA) seeks to raise awareness, funding,

US based not-for-profit charitable organization provides

tomorrow. Their strategic initiatives and funded programs aim

and find a cure for this disease.

support and outreach to brain tumor patients and their

to improve an understanding of all brain tumors to transform

www.fightplga.org

families. For over a decade, the SBTF has supported

n National Brain Tumor Society

research into new and effective treatments, as quickly as

n Southeastern Brain Tumor Foundation

critical, cutting edge brain tumor research at major medical

possible.

n Philippines Brain Tumour Alliance

centers throughout the Southeastern United States.

www.braintumor.org

We are committed to improving the lives of those

http://sbtf.org/

affected by brain tumors. Educating and empowering

n Neuro-Oncology Information Network NOgIN

the patients and their families to improve the quality

n Spinal Cord Tumour Forum

of their lives.

(Web-based)

(Australia)

http://www.facebook.com/pages/PhilippineBrain-Tumor-Alliance/139492062749160?sk=info

This is a website for people in the UK who have had,

NOgIN is a not-for-profit organisation whose mission is

or whose lives have been affected by, benign spinal cord tumours.

dedicated to reducing the physical and emotional impact associated with the diagnosis and ongoing treatment of

n PPR Foundation

patients with a brain tumour. It aims to improve outcomes for

(United Kingdom)

patients and their families living in western Sydney.

We are committed to raise £1 million by 2015 to fund

n STOPhersentumoren.nl

http://www.sydneybrainandspinesurgeons.com.au/ nogin.html

Brain Tumour Research. We will support various research

(The Netherlands)

projects aimed at possible causes, cures, treatments or

A Dutch foundation established to raise public awareness

effects thereof.

and funding for urgently needed brain tumor research to

http://www.thepprfoundation.com/

find the cause and cure for brain tumors more quickly.

n Newro Foundation

www.spinalcordtumour.org.uk

www.stophersentumoren.nl

(Australia) The Newro Foundation is a not-for-profit organisation and

n ROC On!

registered charity seeking to develop new ideas and new

(United States)

research for new hope in the fields of neurology, neurosurgery,

ROC On! (Run Over Cancer) was developed by

n Students Supporting Brain Tumor Research SSBTR

spinal surgery and the neurosciences.

Laurie Dangler, M.D., brain cancer patient, to organize

(United States)

http://www.newrofoundation.com.au/

people to run or walk all or half of the Columbus

Our mission is to provide education and leadership

Marathon and raise funds for research at The Ohio

development to our youth, furnish a platform for them

State University’s Arthur G. James Cancer Hospital.

to play a principal role in effecting positive changes in

www.facebook.com/pages/ROC-on-Run-OverCancer/310235803819

their communities, promote awareness of how common

n Nick Gonzalez Foundation for Brain Tumor Research (United States)

brain tumors are as the leading cause of cancer deaths among their peers and act as outreach to support affected

The Nick Gonzales Foundation for Brain Tumor Research was established in 2007 in honor of Nick, a loving husband,

n San Diego Brain Tumor Foundation

individuals and their families.

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

(United States)

http://www.ssbtr.org/

concentrates on raising public awareness of the early warning

The San Diego Brain Tumor Foundation (SDBTF) was

signs of brain tumours and it also focuses on supporting brain

created to support the brain tumor community in San

tumour research.

Diego (USA).

n Swedish Brain Tumor Association (Svenska hjärntumörföreningen)

http://www.nickgonzalesfoundation.org/

www.sdbtf.org

The Swedish Brain Tumor Association aims to support

n Oklahoma Brain Tumor Foundation (United States)

n Sontag Foundation and Brain Tumor Network - BTN

OKBTF is dedicated to meeting the needs of Oklahoma

(United States)

families, caregivers and patients affected by primary brain or

The Sontag Foundation desires to change the lives

n Tali's Fund

central nervous system tumors.

of individuals in their home community through

(Canada)

www.okbtf.org

the power of medical research. They also assist a

Tali’s Fund was set up in remembrance of four-year-old

brain tumor patient support group in Jacksonville,

Tal Doron, who died from a brain tumor. The Fund raises

n Oscar’s Angels

Florida. Additionally, the Foundation runs The Brain

money for research projects at SickKids Hospital (Canada)

(France)

Tumor Network (BTN) which is a resource for patients

and helps provide emergency funds for families with a

Oscar’s Angel’s is a non-profit charity located in France that

and caregivers seeking information about brain tumor

child undergoing treatment.

cares for and supports families, emotionally and financially,

treatment options and other treatment-related

www.taldoron.com

who have children hospitalized with brain and spinal tumours

information beyond the standard of care.

and severe neurological problems.

www.oscarsangels.com

https://sontagfoundation.org http://www.braintumornetwork.org

n Pediatric Brain Tumor Foundation

n Sophie’s Wish

improve the quality of life for brain tumour sufferers and to

(United States)

(United Kingdom)

aid the search for better treatments, with better outcomes.

The Pediatric Brain Tumor Foundation works to eliminate the

Sophie’s Wish (UK) aims to raise awareness of brain

We want to raise national awareness of this devastating

challenges of childhood brain tumors. It is the world’s largest

tumours, their symptoms, diagnosis and treatment.

illness and our ultimate ambition is to find a cure. We

non-governmental source of funding for childhood brain tumor

We also campaign for and raise much-needed funds

also provide UK holidays for terminally ill children and

research. The PBTF also provides educational resources and

for further research into brain tumours in order to help

their families, as well as financial support for those who

emotional support for brain tumor survivors and their families.

improve this desperate survival rate.

need it.

www.pbtfus.org/index.htm

http://sophieswish.org.uk/about-us

www.taylansproject.com

patients, relatives and caregivers with information and the opportunity to connect with each other.

www.hjarntumorforeningen.se

n Taylan’s Project (United Kingdom) Taylan’s Project focuses on funding vital research to

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n Team Billy (United States)

n Tug McGraw Foundation (United States)

n Worcestershire Brain Tumour Support Group

This organisation’s mission is to foster public support of a

The US-based Tug McGraw Foundation was

(United Kingdom)

vision of a world where brain tumors no longer exist

established to “raise funds for pioneering brain

The Worcestershire Brain Tumour Support Group (WBTSG)

as a deadly and debilitating illness. They also fund

cancer research, increase public awareness of

in the UK aims to offer information and support to anyone

medical research.

the disease, and support college students who

affected in any way by a brain tumour.

www.teambilly.org

exemplify leadership and Tug’s inspiring

www.wbtsg.org

‘Ya Gotta Believe’ spirit”..

n Teenage Cancer Trust

http://www.tugmcgraw.org

(United Kingdom)

n Zimbabwe Brain Tumor Association The Zimbabwe Brain Tumor Association (ZBTA) seeks to

The Teenage Cancer Trust (TCT) is a charity dedicated to

n United Brain Tumour Support

campaign for widespread knowledge on brain tumors, to

improving the lives of teenagers and young adults with

(Australia)

improve the quality of life for brain tumor patients and

cancer. They fund and build specialist units for young

Located on the Gold Coast, Queensland, Australia.

their caregivers in Zimbabwe, through access to better

people in National Health Service hospitals. TCT also

Contact Pete McLaughlin: (Australia) 0422 784885

care, improved facilities and treatment. They seek to

provides specialist Nurse Consultants who provide clinical care, develop research, deliver professional education and

instil hope and strength through shared knowledge and support. The ZBTA’s motto is: “achieving through hope

ensure that standards remain as high as possible.

n Voices Against Brain Cancer

and strength”.

www.teenagecancertrust.org

(United States)

zbta@mweb.co.zw

Our mission is to find a cure for brain cancer by

n The Brain Tumour Charity

advancing scientific research, increasing awareness

(United Kingdom)

within the medical community and supporting

The Brain Tumour Charity funds scientific and clinical

patients, their families and caregivers afflicted with

research into brain tumours and offers support and

this devastating disease.

information to those affected, while raising awareness and

www.voicesagainstbraincancer.org

influencing policy in the UK.

www.thebraintumourcharity.org

n Walk for Kate and Blankets for Brains

n The Cure Starts Now Foundation

(United States)

(United States)

Walk for Kate was founded in June 2010 as a

The Cure Starts Now Foundation fights for the cure for

nonprofit 501(c)3 corporation dedicated to

children with brainstem glioma and cancer survivors

finding a cure for brain tumors. Our goals

everywhere.

include advancing community awareness

www.thecurestartsnow.org

and raising funds through walking (and running

n The Tanner Seebaum Foundation

further brain tumor research.

(United States)

http://www.walkforkate.org/about.html

for those more adventurous among us) to

The Tanner Seebaum Foundation is a US-based to fund medical research that will lead to a cure for this

n We Can Pediatric Brain Tumor Network

terrible disease and places special emphasis on the

(United States)

treatment of ependymoma and glial tumors of the brain

We Can is a (Los Angeles, USA) parent-initiated

and spine.

pediatric brain tumor network that offers information

www.tannersfoundation.org

and emotional support to families with children

(Centennial, Colorado) non-profit organisation that strives

who have brain tumors.

n Thorne Mason Trust

www.wecan.cc/We_Can/Home.html

(United Kingdom) The Thorne Mason Trust provides support to

n Werkgroep Hersentumoren

suit the needs of individuals who have been

(Belgium)

affected by a brain tumour or cancer in any way.

Werkgroep Hersentumoren vzw –

These include services such as gardening,

Study Group Brain Tumours Belgium – is a

cooking, cleaning etc. We are also raising money

multiprofessional group consisting of patients

to fund vital research into brain tumours. The

and their relatives, physicians, caregivers in the

Thorne Mason Trust’s long term aim is to open

broadest sense of the word, neurologists,

its own complementary brain tumour and cancer

neurosurgeons, nurses, psychologists,

care centre based in Pembrokeshire.

social workers, etc.

www.thornemasontrust.com

http://www.wg-hersentumoren.be/site_en/ home.php

n Tuberous Sclerosis Association (United Kingdom)

n WNC BTS

The Tuberous Sclerosis Association promotes

(United States)

awareness, research and the best management of

WNC BTS is a US-based (Asheville, North

tuberous sclerosis complex and supports all affected

Carolina) adult support group for brain tumor

individuals and families.

survivors, their families, and caregivers.

www.tuberous-sclerosis.org

www.wncbraintumor.org

Brain Tumour

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An old proverb says:

“It is better

to light a candle than to curse

the darkness.�

With thanks to the patient and carer organisations around the world which provide support, information, research funding and advocacy to the brain tumour community. ..................... If your organisation provides such services, and it is not listed in our directory, please let us know by contacting chair@theibta.org

114

Brain Tumour


INTERNATIONAL BRAIN TUMOUR ALLIANCE

Please join us in 2015!

and the

INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK

These two projects are being repeated for the ninth year in a row in 2015. We are currently compiling our list of 2015 supporting organisations. Contact chair@theibta.org or walkandweek@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. Brain Tumour

115


E R O M H C R A E S E R T R O P P U S AND

INTERNATIONAL BRAIN TUMOUR ALLIANCE

www.theibta.org

International Brain Tumour Awareness Week 25 - 31 OCTOBER 2015

Brain Tumour Magazine: World Edition 2015  

The sixth annual edition of the official magazine of the International Brain Tumour Alliance (IBTA).

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