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INTERNATIONAL BRAIN TUMOUR ALLIANCE

Report of the

First World Summit of Brain Tumour Patient Advocates

Lafayette, California, USA 18 - 20 November 2013 1


Acknowledgements and Sponsors The International Brain Tumour Alliance is grateful to the following organisations for their sponsorship of the First World Summit of Brain Tumour Patient Advocates

We are very appreciative of the enthusiastic support for the Summit from the Society for Neuro-Oncology (SNO - www.soc-neuroonc.org), especially its Executive Director, Chas Haynes, as well as the invaluable assistance for venue location and contract negotiation provided by Christine Quah, Manager, Global Accounts, HelmsBriscoe (www.helmsbriscoe.com). Thanks also go to Dr Susan Chang and Dr Virginia Stark-Vance for making time in their very busy schedules to participate in the Summit. We are extremely grateful for the wise advice, help and support given to us by our eleven IBTA advisors on this project: Jean Arzbaecher, Jenny Baker, Rosie Cashman, Maureen Daniels, Carol Knight, Carol Kruchko, Mary Ellen Maher, Sharon Lamb, Mary Lovely, Sally Payne and Chris Tse. Special thanks to Carol Kruchko (Founder and President, Central Brain Tumor Registry of the United States/CBTRUS) and Matt Pitt (Chair, Brain Tumour Alliance Australia/BTAA) for their invaluable notes from the IBTA Summit which have contributed significantly to the compilation of this report. The First World Summit of Brain Tumour Patient Advocates, a project of the International Brain Tumour Alliance (IBTA), was a wholly independent activity and was conceived, planned and carried out by the IBTA. For details of the IBTA’s sponsorship and transparency policies, please see www.theibta.org All photographs © Paolo Salcido 2013, www.salcidophotography.com and reprinted with permission Summit report design by Edwina Kelly at edwina@edwinakellydesign.co.uk The IBTA has made every effort to be accurate regarding the information contained in this report. 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 report is for educational purposes only. The material in this report is in no way intended to replace professional medical care, advice, diagnosis or treatment from a doctor, specialist or other healthcare professional. Company sponsorship of the First World Summit of Brain Tumour Patient Advocates 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 by participants at the First World Summit of Brain Tumour Patient Advocates and included in this report 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, religion, sex, sexuality, belief or disability.

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About the International Brain Tumour Alliance

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

INTERNATIONAL BRAIN TUMOUR ALLIANCE THE International Brain Tumour Alliance (IBTA - a not-for profit organisation registered in England and Wales) - has existed since May 2005. It was established at the World Federation of Neuro Oncology meeting in Edinburgh, Scotland and is a worldwide cooperative initiative involving brain tumour patient support, advocacy and information organisations as well as including researchers, scientists, clinicians and allied health professionals who work in the field of neuro-oncology. The IBTA advocates for equitable patient access to brain tumour therapies; encourages the establishment of brain tumour support groups in countries where they don’t yet exist; and raises awareness of the challenges of this devastating disease. The IBTA’s two major annual initiatives - “The International Brain Tumour Awareness Week” and “The Walk Around the World for Brain Tumours” - have been supported by up to 197 brain tumour and cancer-relevant organisations around the globe. The IBTA produces a monthly electronic news bulletin which is distributed to over 6,000 contacts internationally. It also publishes a major annual magazine called Brain Tumour. Annually 12,000 copies of the magazine are printed and made available for free to contacts in 110 countries.

The IBTA also attends and exhibits at significant scientific conferences around the globe, including the American Society of Clinical Oncology (ASCO), the European Association of NeuroOncology (EANO), the Society for Neuro-Oncology (SNO), the International Symposium on Pediatric Neuro Oncology (ISPNO) and the European Cancer Congress, as well as conferences organised by national professional societies at which the IBTA usually has a display and distributes its magazine to participants. The IBTA Co-Directors, Denis Strangman (Australia) and Kathy Oliver (United Kingdom) are frequent plenary session speakers at major conferences, providing the patient and caregiver perspective on a wide range of issues of current concern, including clinical trial design and related explanatory materials, health technology assessment and regulatory issues, and the place of brain tumours within the general cancer community, particularly as a rare or less common cancer. The IBTA also provides the brain tumour patient and caregiver perspective in submissions to regulatory agencies on a wide variety of issues. Additionally, the IBTA regularly engages in a range of brain tumour-related and rare/less common cancer-related initiatives on a political level in various geographic regions. The IBTA is a completely voluntary organisation and the value of its work has been recognised by a number of awards, and appointments to advisory boards and international brain tumour and cancer initiatives.

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Report of the First World Summit of Brain Tumour Patient Advocates 18 - 20 November 2013 Lafayette Park Hotel, Lafayette, California, USA Prepared by Kathy Oliver (Co-Director) and Denis Strangman (former Chair), using notes helpfully provided by Carol Kruchko of the Central Brain Tumor Registry (CBTRUS) in the USA and Matthew Pitt of Brain Tumour Alliance Australia (BTAA).

Executive Summary Nearly two years in the planning, the “First World Summit of Brain Tumour Patient Advocates” – organised by the International Brain Tumour Alliance (IBTA) – provided a unique opportunity to meet like-minded people from around the globe; exchange ideas on best practice, challenges and advocacy experiences; and build new relationships between organisations and individuals in the brain tumour advocacy arena. The two-day Summit brought together for the first time ever, over 60 dedicated brain tumour patient advocates representing the main support, advocacy and information charities and not-forprofits from 20 countries around the globe. The Summit was an idea conceived by the IBTA after witnessing how successful such a conference could be for other site-specific cancer advocates, such as those from the kidney cancer, chronic myeloid leukaemia and sarcoma communities. Attendance at the Summit was by invitation and participants came from: Argentina, Australia, Belgium, Canada, Denmark, India, Ireland, Italy, Japan, Lithuania, The Netherlands, New Zealand, Norway, Singapore, Spain, Sweden, Taiwan, United Kingdom, United States, and Zimbabwe. Planning for the Summit involved raising sufficient funding so

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that financial assistance could be offered to brain tumour patient advocates to attend from the far corners of the world. A team of eleven IBTA advisors provided help, advice and support throughout the project, from its conception to its delivery. The main theme of the Summit was “collaboration and sharing”. The conference was professionally facilitated by a leading patient advocacy expert, Markus Wartenberg from Germany. The Summit was collegially designed so that nearly all of the participants either presented in a plenary session; spoke as part of a panel, ran a workshop or marketplace; acted as rapporteurs; or assisted in a practical way to ensure a smooth meeting. The main finding from the meeting was that although our countries vary substantially in terms of wealth, regulatory and healthcare systems and levels of support offered to patients with brain tumours and their families, on the whole patient advocates at the Summit had more in common with each other’s challenges than they had differences. A very wide range of topics was discussed at the Summit and these are described in this report which is divided into Day 1 and Day 2.


Above: Brain tumour patient advocates representing 20 countries attended the IBTA’s 2013 Summit in Lafayette, California

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DAY 1 Tuesday, 19 November 2013

Introductory Presentations MARKUS Wartenberg (Germany), the Summit facilitator, officially opened the Summit with a warm welcome acknowledging the distances that the 60 plus delegates had travelled. Markus described his background and affiliation with the international sarcoma and kidney cancer communities, emphasizing the commonality between the challenges associated with rare cancers like brain tumors and sarcoma. Markus said that advocates at the Summit not only represented their countries but also nearly 600 years of brain tumour patient experience between them. Kathy Oliver, a founder of the IBTA and now its Chair and Co-Director, then told Summit participants about the IBTA’s establishment in 2004 during the Society for Neuro-Oncology (SNO)/World Federation of Neuro-Oncology (WFNO) conference in Edinburgh, Scotland and how the Summit was just a twinkle in her and Denis’ eyes at that time. She likened the organizing of the Summit to planning a wedding whose guests included the “movers and shakers” in the global brain tumour advocacy community. She hoped the Summit would be a happy and inspirational experience, sharing ideas for the benefit of the patients, and collaborating for the benefit of the organizations. Creating a promising future for brain tumour patients was paramount for the IBTA, she said Before turning the podium over to Denis Strangman she added that every morning we should all ask ourselves: “What can we do for brain tumour patients today? And every evening we should all ask if have we done enough.” IBTA then-Chair and Co-Director Denis Strangman said that while there was a very comprehensive list of subjects in the program there were some important issues that were not formally scheduled for discussion. He suggested to the participants that they bore those in mind and raised them with colleagues in the many informal discussions that it was hoped would take place during the Summit meals and breaks. These subjects included the stress that a diagnosis of a brain tumour can have on a marriage, the stress that working in this environment can have on the paid and volunteer workers, and the degree to which patients and caregivers are supported for their spiritual and existential needs. He also acknowledged the pressures borne by advocates at the Summit, some of whom who were also brain tumour survivors. He mentioned that there were still some important areas of the world which were not represented at the Summit such as China, the Middle East, much of East Asia and most of Africa.

Note: Summit participants arrived on 18th November and attended an informal welcome buffet that evening, hosted by the International Brain Tumour Alliance at the Lafayette Park Hotel. This provided a great opportunity for many of the Summit participants to meet each other for the first time and also to do some networking.

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Markus Wartenberg

Kathy Oliver

Denis Strangman


Christine Mungoshi

Luke Mungoshi

Neil Dickson

Yutaka Sawamura

Yuko Moue

Hisato Tagawa

Oscar Prieto Martinez

Angela Dickson

Lia Le Roy

Darren Terris

Lynda Tse

Elizabeth Wilson

Gordon Oliver

Kay Verble

Sharon Lamb

Sally Payne

Geri-Dee Shaffer

All Summit participants introduced themselves and briefly described their organisations and some of the challenges they faced. Here are some excerpts from the introduction session of the Summit. ■ Christine Mungoshi and her husband Luke from the Zimbabwe Brain Tumour Association said that their organization was the only paediatric and adult patient support organisation in Africa. ■ Yutaka Sawamura, a well-known neurosurgeon from Japan (who helped with interpreting for the Japanese Summit delegates) expressed a need for better hospice care for pediatric patients. ■ Yuko Moue represented the Pediatric Brain Tumour Association of Japan and attended the Summit with her colleague Hisato Tagawa. ■ Oscar Prieto Martinez , President of ASATE, the Association of Patients with Brain Tumours in Spain, noted the poor follow-up care for patients in his country. ■ Lia Le Roy from Werkgroep Hersentumoren, the Belgium Study Group Brain Tumours, wanted better access to new therapies, a better social life for patients and improved care after treatment. ■ Angela and Neil Dickson from The Brain Tumour Charity (UK) spoke about the evolution of their initial organization, the Samantha Dickson Brain Tumour Trust, and about the charity’s recent merger with Brain Tumour UK. ■ Lynda Tse (wife of Chris Tse, an IBTA advisor), who is a brain tumour survivor from New Zealand said: “When I was introduced [at the Summit] as an almost eight year survivor of GBM, the room erupted into applause and there was nowhere to hide. I felt embarrassed but at the same time overwhelmed with the support and encouragement of everyone in the room. At that moment, there was no place for feelings of survivor guilt, just a sense of sharing a difficult journey with friends who understood.” Darren Terris (Canada) has been supportive of the work undertaken by Jennifer Gouchie representing the Canadian Alliance of Brain Tumour Organisations (CABTO) at the Summit. Elizabeth Wilson, President and CEO of the American Brain Tumor Association (ABTA) was also present at the Summit. Kay Verble also attended the Summit. Kay is Executive Director of the Sontag Foundation (USA), which is located in northeast Florida, and which funds medical research into brain tumours. As a resident of San Francisco, IBTA Advisor Sharon Lamb provided invaluable assistance in pre-Summit planning. Gordon Oliver, husband of IBTA Co-Director Kathy Oliver, provides legal advice to the organisation and he also attended the Summit. IBTA advisor Sally Payne (Australia) helped the speakers with their presentations and assisted with the organisation of the Summit. Geri-Dee Shaffer is Executive Director of the Southeastern Brain Tumor Foundation in the USA and later on in the Summit participated in a panel discussion on unmet needs in the brain tumour community. 7


DAY 1 Tuesday, 19 November 2013

Brain Tumour Therapy Update: the keynote presentation by Dr Susan Chang, Neurosurgeon (USA) DR. Susan Chang, Professor of Neurological Surgery from the University of California, San Francisco, Comprehensive Cancer Center, provided an update on brain tumor therapies in her keynote presentation at the Summit. Dr. Chang said: “We get hope from new therapies�. She discussed the limitations of current therapies: surgery (ability to excise the entire tumour), radiation (dose limited by toxicity), and chemotherapy (getting drugs through the blood brain barrier and side effects). She discussed strategies to improve the current treatments such as incorporating new surgical techniques including image guided surgery for cortical mapping to remove as much tumor as possible while preserving quality of life; functional imaging with MEG to evaluate the function of tissues; and detailed imaging using Diffusion Tensor MRI. Dr Chang explained that the Europeans had provided a new assessment tool leading the way to incorporate 5-ALA with glioma resection. 5-ALA is a fluorescent agent administered orally before surgery which lights up the tumour in the surgical bed thus enabling the neurosurgeon to remove more of the tumour. She spoke of using nanoparticles which can be engineered to deliver drugs into the tumour cells more efficiently than Gliadel wafers. She also spoke about intratumoral delivery using gene therapy and interstitial gene therapy whereby a virus is injected into the tumour and a special gene in the virus allows a follow-up drug to be activated. Dr Chang also spoke about engaging patients more in clinical trials and paid tribute to their altruism and bravery. She continued with an explanation of new targeted therapies which move away from altering cell division and focus on pathways that influence tumour growth, invasion, blood vessel formation and cell death. Comprehensive genomic characterization now defines human glioblastoma genes and pathways which aids in finding drug targets. Dr Chang explained how targeting growth factor receptors works and how binding the factor with a drug like bevacizumab (Avastin), an antiagiogenic therapy, prevents the signal from happening. Additionally, Avastin also normalizes blood vessels by destroying tumour blood vessels and prohibiting more from growing. She explained how targeting tumour stem cell populations works by recognizing treatment resistant populations of stem cells and how therapeutic strategies target pathways relevant to these cells. Dr Chang touched on experimental treatment approaches and the use of neural stem cells. She also presented some slides on immunotherapy including an explanation of tumour vaccine components and immunotherapy using antibodies. A question and answer session followed Dr Chang’s presentation. Alex Johansson from Hjarntumorforeningen, the Swedish Brain Tumour Association, commented on how quality of life is important to patients.

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Dr Susan Chang

Alex Johannson


He suggested that delegates read an article on “Diets and brain tumours” and asked Dr. Chang about cancer being a metabolic disease. She said that researchers and clinicians are learning more about tumour metabolism. She stated that in low grade gliomas (LGG) 80% of patients have a newlydiscovered protein in their tumour cells. This new metabolite may be linked to a pathway. It is not clear how diet is related and there is no clear link to brain tumours. Dr Chang does not advise patients to go on specialized diets. A short discussion followed on questioning the focus of research being on brain tumours with rapidly dividing cells rather than on brain tumours that are slow growing such as meningioma. The conversation continued with the rationale that since the incidence of grade 1 meningioma (grade 1 = non-malignant) is higher why aren’t researchers looking at the signalling in these cells? The aim should be to achieve a chronic disease model and halt progression which would be a great advance. One participant from the UK asked which was more important technology or the neurosurgeon’s experience? Dr. Chang replied that technology is a tool and gives the physician an advantage but that the value of the doctor-patient connection is more important. Another advocate asked about the availability of 5-ALA in the US. Dr. Chang responded that clinical trials are ongoing and will need to be completed before possible approval and general availability. Another delegate questioned whether molecular targeting is the best way to approach treating a brain tumour. Dr. Chang responded that tumours are heterogeneous so it is hit or miss as to which pathway to target. She said that tumours can also develop resistance to drugs which poses challenges to this method. Al Musella from the Musella Foundation for Brain Tumor Research (US) asked what the advocacy community could do to get more patients into trials? Dr Chang responded that about five to ten percent of adult patients are enrolled in trials and this low number is problematic. She said we could learn from the pediatric clinical trial model in which enrolment is very high, almost 70 percent. She said that there is no shortage of patients, but it is a challenge for clinicians as to which trial fits which patient.

Al Musella

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DAY 1 Tuesday, 19 November 2013

Setting the Scene: an Introduction to Some of the Advocacy Issues we Face in the Brain Tumour Community Today THE first speaker in this second session was Markus Wartenberg, the Summit facilitator. His presentation focused on Health Technology Assessment (HTA), a topic which was fairly familiar to advocacy groups from Europe, Canada and Australia but not so familiar to those from the USA. Markus asked these questions of the audience: ■ Do new treatments bring added value? ■ Should healthcare invest in new treatments? ■ Where does investment come from? Markus explained that cost, value and ethical considerations need to be considered. He then provided a definition for HTA as being a systematic evaluation for the reimbursement (or not) of new treatments provided on national health services. He posed questions concerning the purpose of HTA and provided answers to quantification. The patient’s perspective very much needs to be factored into the HTA process, he said, and the process is here to stay although it will evolve and expand as the times change and new kinds of therapies develop. Al Musella of the Musella Foundation (USA) presented next. He focused on “Accessing innovative therapies”. He described the hurdles in finding treatments, securing permission to use them and paying for them. He divided treatments into approved therapies and off-label therapies. He explained that there are over 190 approved cancer drugs in the US. He listed information sources such as www.clinicaltrials.gov and www. virtualtrials.com He urged Summit participants to develop a perspective and know the denominator data before they disseminate information. There are currently over 800 brain tumour trials in the US, with 199 different treatments. John de Bruin and Jelle Jan de Vries from the Dutch Workgroup Brain Tumors then delivered a joint presentation “Caring for the Caregiver”. They provided a very focused, concise picture of what it was like for those caring for brain tumour patients. They stated that there is no formal education process for caregivers and the task is usually thrust suddenly and without warning on a person who may be a partner, family member or friend. The brain tumour patient may exhibit dysfunctional behavior, have cognitive problems and may not have a realistic image of himself or herself. The caregiver may be isolated from relatives and friends who have no real understanding of the daily issues caregivers face. Caregivers often have no time to themselves. Many caregivers soldier on and try to do everything on their own, often becoming exhausted in the process. Caregivers may also have employment problems as their focus, by necessity, has shifted to the patient. Caregivers often have to give up their own jobs to look after brain tumour patients. They may have other responsibilities including the wider family’s welfare. Jelle’s experience indicated that relief comes from sharing experiences with other caregivers.

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Markus Wartenberg

Jelle Jan de Vries (left) and John de Bruin (right)


Carl Cadogan

Kathy Oliver

He listed ways to share: discussion groups with other caregivers, Facebook groups and peer contacts. Carl Cadogan, CEO from Brain Tumor Foundation of Canada and Marianne Lee, the Foundation’s Chair of Advocacy gave a tandem presentation and spoke about “Support and Information Provision”. Their Foundation supplies information for patients and families online and in patient handbooks, newsletters and other publications. They organise both adult and pediatric support groups. The adult group focuses on respite. Brain Tumour Foundation of Canada also has a pediatric program, Brainwaves. Their information program includes educational events which provide days of hope and support, a newsletter available in print and online, and a toll-free support and information line. Future plans for the Foundation include expanding their online presence in the French-speaking population in Canada; continuing to evaluate online communication trends embracing meaningful concepts; matching their information to the disease cycle; and learning more about their “stakeholders” in order to best serve them. They also mentioned that their current focus is to start a brain tumour registry in Canada similar to that of the Central Brain Tumor Registry of the United States (CBTRUS). Kathy Oliver, Co-Chair of the IBTA, then spoke on the important topic of “Personalized medicine: hype versus hope”. Kathy used the book To Kill a Mockingbird as a framework for analogies in her presentation. The main character of “Mockingbird”, Atticus Finch, a lawyer, describes a simple trick to use throughout life in the hopes of understanding other people’s situations better. He said: “...if you can learn a simple trick, you’ll get along a lot better with all kinds of folks. You never understand a person until you consider things from his point of view, until you climb into his skin and walk around in it.” Kathy’s point was that empathy is key to making a difference and can be applied to brain tumour advocacy. It was important therefore, she said, for brain tumour advocates to ensure that the patient perspective informed future developments regarding personalized medicine. She provided a short definition of personalized medicine adapted from the National Institutes of Health (NIH), namely that personalized medicine is “the right treatment for the right person at the right time.” The NCI also provides a definition of targeted therapy which includes “drugs or other substances that block the growth and spread of cancer by interfering with specific molecules involved in tumor growth and progression”. Kathy said that personalised medicine represents hope. But the concept of personalised medicine is also sometimes surrounded by a lot of hype and quite substantial scientific, ethical, and regulatory challenges that we, as brain tumour patient advocates, need to be aware of and ask questions about. Advocates need to also ensure that the various stakeholders understand the patient perspective and needs. Robin Boettcher, CEO of the Pediatric Brain Tumor Foundation (PBTF) in the US, presented on the challenges of pediatric brain tumours. These include: lack of public awareness, lack of drug development and lack of funding. 11


Robin listed the focus points for the PBTF: ■ support for the Central Brain Tumor Registry of the US; ■ conference support in neuro-oncology; ■ continued partnering with the Society for Neuro-Oncology (SNO) with a focus on the Pediatric Neuro-Oncology Basic and Translational Research Conference where attendance increased by 50% in 2013; ■ supporting the International Society for Pediatric Neuro-Oncology (ISPNO) conferences which occur every other year; and ■ forging partnerships and assessing programs for children in hospitals around the country. She said there are also the challenges of raising awareness of childhood cancer survivors and carrying out more research into this area. Robin echoed what other speakers had said previously that bringing advocacy groups together will help with awareness of all the issues she mentioned. Dr Uday Krishna, an oncologist from the Brain Tumour Foundation of India, supports patients as well as advocates for awareness and better care. He described the economic problems of living in a developing country. He stated that the socio-economic landscape in India is permeated with a cultural bias toward superstition which affects the efficacy of health care. Superstitious beliefs coupled with crude legislative norms in rural areas foster alternative forms of therapy. There is also the challenge in India of many different linguistic dialects. Dr Krishna listed the resource constraints faced with treating patients in India such as ■ limited surgical suites; ■ lack of imaging modalities; Dr Uday Krishna ■ few clinical trials; ■ lack of professional expertise and ■ an established health focus on communicable diseases. He addressed palliative and end of life issues and said that a survey had been conducted among Asian neuro-oncologists on this issue. Results indicated that there was low referral and access to these services.

Marianne Lee

Discussion Period These plenary presentations were followed by a short discussion period. Some of the points raised by various people in the audience were: ■ It is important to come together to achieve change. ■ It is important to understand clinical trials and regulatory processes, including having an understanding of trial endpoints. ■ In many countries, psycho-social services are lacking and more data on investment in these services is needed. ■ The critical aspect of personalized medicine is having tumour tissue and blood which must also be stored optimally. Collection of normal tissue is important as well so that the question of “what is it about normal tissue that changes?” can be answered.

Robin Boettcher

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DAY 1 Tuesday, 19 November 2013

The Marketplace Session The Marketplace was an interactive session with very short presentations and concise, focused discussions. The aim of this session was to provide Summit participants with the chance to discuss topics with experts in an informal small group setting. Over the two hour period of the Marketplace, there were six short sessions (stalls) on different topics each lasting about 30 minutes. Experts stayed at their market stalls in different parts of the Summit hotel while participants moved from one stall to the next every half hour. Each participant chose three market stalls to visit in the two hours. This way, people were able to engage in a number of different discussions and perhaps even take away new skills.

Marketplace Stall 1 Fundraising in an era of austerity Market stall holders: Angela and Neil Dickson (The Brain Tumour Charity, UK) Angela and Neil Dickson started their session with the notion that an organization has to make the decision to move from a home-based model to a professional model in order to survive. They recounted their own charity’s history including its growth in fundraising. They discussed the characteristics of good staff: passion, honesty, openness and respect for patients, donors and volunteers. The Dicksons also mentioned The Brain Tumour Charity’s HeadSmart programme which addresses delays in diagnosis of pediatric brain tumours.

Angela Dickson

Marketplace Stall 2 Can doctors improve their communication with brain tumour patients? Market stallholders: Drs Wendy and Marty Kaye (Students Supporting Brain Tumor Research, USA) The Kayes spoke from the basis of their own experiences as paediatricians in Arizona where they had encountered a variety of situations. Participants at this market stall reviewed how communication could be improved from both a patient and physician perspective. Many excellent ideas were brought up by the attendees, which included patients, caregivers, nurses and physicians. Physicians may improve communication with patients in the following ways: ■ listen more, talk less ■ use simpler terms

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■ make eye contact ■ take the time to be supportive, caring and empathetic ■ balance hope with realism ■ review both the good and bad effects of treatment options ■ make use of the “teach back method “ to be sure patients fully understand all information given to them ■ enlist a ‘health care team” to share responsibilities Patients can improve channels of communication with their physicians in the following ways: ■ if possible, choose neurological sub-specialists you feel comfortable with ■ have a written list of questions at your appointments, and verify that they are all addressed ■ bring a second set of ears along (perhaps a caregiver/family member) ■ make sure you feel an integral part of the multi-disciplinary team’s decisions in your care plan, and express all expectations of what you feel your physicians should do to help you

Marketplace Stall 3 Working with volunteers/succession planning and sustainability of brain tumour organizations Market stallholder: Jenny Baker (IBTA Advisor and formerly CEO of Brain Tumour UK) Jenny said that every day millions of people from all ages, backgrounds, ethnicities and faiths across the world, step forward to tackle problems, human needs and gaps across their local communities and/or their shared communities of interest. The brain tumour community is no exception. All organisations attending the IBTA Summit share a common heritage. All were founded by passionate, caring volunteers wanting to make a difference for brain tumour patients today and in the future. Jenny mentioned that brain tumour patient organisations share a common language too. She said: “We speak about ‘the journeys of brain tumour patients’ at different stages of their care and treatments. Likewise each organisation at the Summit is at different stages of its journey. Some are recently founded and wholly volunteer-led, while others have evolved over time into multi-million dollar professionally led organisations with a CEO and 20+ staff managing and supporting hundreds of volunteers and fundraisers.” Representatives from both ends of this spectrum participated in the Summit. This variety enabled a high level of shared learning and a vibrant exchange of ideas between all attendees.

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Drs Wendy and Marty Kaye (center) conduct their marketplace session.


Some additional thoughts from this marketplace session were: ■ Meaning well is not enough! ■ Think strategically about volunteering and develop policies and procedures as you progress. ■ Profile volunteering roles to support your mission. ■ Beware of accepting any offer of help for its own sake. ■ Take care to match the right volunteers to the right roles and check that volunteers are doing what you want them to. ■ Manage, support and train volunteers - be prepared to invest time and resources. ■ Volunteers don’t necessarily come free - at least offer out-of-pocket expenses even if these are declined. ■ As your organisation grows, provide a framework and structure for developing and managing volunteering; and consider a paid/ volunteer coordinator (part or full-time). Jenny Baker

Marketplace Stall 4 Working with Industry Market stall holder: Markus Wartenberg, Summit Facilitator Markus started his session by identifying financial needs and looking at potential resources. He said there was the overriding philosophical question of “Is it okay to work with pharmaceutical companies?” He said that pharmaceutical companies aspire to transparency so advocates must meet this aspiration honestly themselves as well. Checking out local and national regulations is important as is asking pharmaceutical companies what regulations they have in place. By developing its own code of conduct a patient organization gives itself parameters and guidelines. However, a patient organization must be careful in its alliances making sure these codes of conduct are compatible. He cautioned about third party services and the need to be independent. Markus elaborated on some ways to engage pharmaceutical companies: via donations, unrestricted grants, sponsorship of a specific project and/or sustaining partnerships. He suggested having yearly meetings with involved pharmaceutical companies in a partnership situation; always being in control of one’s project; assigning one person from a patient organisation to liaise with the pharmaceutical company who has and can convey a clear picture of the organization’s mission; keeping promises and being timely. He stressed the importance of not having pharmaceutical companies influence a patient organization’s information materials. Markus Wartenberg

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Marketplace Stall 5 Social Media and the IT Revolution Market stallholder: Kristina Knight (National Brain Tumor Society, US) Participants came to the session with varying levels of social media experience and use in their organizations. Several smaller organizations were concerned with balancing personalized attention with patients against more ‘impersonal’ online engagement. Participants discussed finding assistance through someone who understands social media and who can offer help and support since both online and offline approaches play an important role in today’s successful connections with constituents. Several people said that they use Facebook groups to allow teams or support group members to have private group chat spaces, and that works quite well. There was also discussion about video platforms and the challenges of being on free spaces and the effect of other, extraneous items which may be posted in association with your piece. Situations on the Internet and social media can get very complicated and difficult. For example, one Marketplace participant explained that sometimes personal attacks are mounted online. This led to further discussion on the challenges of dealing with a wide audience and the lack of control over input.

Marketplace Stall 6 Working with print and broadcast media (including public service broadcasts) Market stallholders: Carl Cadogan (Brain Tumour Foundation of Canada) and Hugh Adams (Brain Tumour Research, UK) Carl Cadogan presented a short video of his organisation’s awareness campaign and spoke about how it was used. The film was stunning and poignant. This made it easily distributable and the film was picked up by the broader press. Hugh Adams presented several short TV advertisements that had been developed by various brain tumour advocacy groups. The workshop was an open discussion and looked at mood in video pieces. Participants in this Marketplace discussed how to give hope to patients and motivate fundraisers while at the same time portraying the statistical gravity of a brain tumour diagnosis and the inherent funding inequalities. One participant told the group of a case where a patient took part in a video but wasn’t involved in the editing process. When he

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Kristina Knight


sat down with his family to watch the video, it was the first time they all became aware of the true nature of his situation and they were devastated. Participants also addressed the question of who they were making video pieces for - was it for existing members of the brain tumour community who may already know the funding reality or was it for potential new benefactors who needed to be shocked into action? Overall, it was felt that human interest and emotion were more persuasive than clinical facts in the patient organisation video setting. The group also looked at the role of celebrities in patient group videos/publicity and the consensus was that although they could give weight to a piece this only really came if they had a direct link to a brain tumour story.

Hugh Adams

Carl Cadogan

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DAY 1 Tuesday, 19 November 2013

Brain Tumour Statistics After the Marketplace sessions, there was a plenary session on brain tumour statistics presented by Carol Kruchko of the Central Brain Tumor Registry of the United States (CBTRUS). Carol said that knowledge of cancer surveillance and registration, from its role in research to its fundamental workings, is not adequately addressed by advocacy organizations. Education is lacking about statistics, and an opportunity may be missed by advocacy groups for improvement in the cancer reporting and collecting of brain and CNS tumours. The Pediatric Brain Tumor Foundation, which was represented at the Summit by Robin Boettcher and Joanne Salcido, wondered if there was a way to answer the question from the parent of a pediatric brain tumour patient who asked: “If my child makes it the first year what are the chances he or she will make it another year?” Carol responded by mentioning that a study on conditional probability of survival demonstrates the value of interaction between advocacy and cancer registration and epidemiology. Another take-home message from Carol’s presentation was that no population-based cancer registration or surveillance organization collects metastatic brain tumour data.

Carol Kruchko

Joanne Salcido

DAY 1 Tuesday, 19 November 2013

Challenges and Solutions Examples from my Own Country Six speakers presented to the plenary gathering on challenges and solutions regarding advocacy work in their own country-specific brain tumour communities.

Presentation 1 - Meagan’s Walk (Canada) Denise Bebenek from Meagan’s Walk: Creating a Circle of Hope, a Canadian advocacy organization, provided an update of her group’s activities. Denise explained that she had a “crazy” vision of hugging the Hospital for Sick Children (“SickKids”) in Toronto which was providing support and love to her own child and family during their brain tumour journey. When Denise applied for a permit to hold her “Creating a Circle of Hope” hospital “hug” she was assigned the Canadian Mother’s Day date which is now associated with Meagan’s Walk. Denise Bebenek from Meagan’s Walk

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Each year thousands of participants of all abilities take part in the 5km Meagan’s Walk, which culminates in a human “hug” around SickKids. This event, which involves thousands of participants, helps raise funds and awareness. She said that this effort started in her basement. In 2013 approximately 3500 people walked and joined hands and hugged the hospital. Included in this number were individuals, families and numerous teams. There was a total of 83 teams, including some teams for living patients, and teams for surviving loved ones of deceased patients. Many of these teams carried their own banners with compelling messages. Inclusivity of all children and to empower children was part of the message. Denise explained that one way she retains volunteers is to work with schools. Her solutions also included getting sponsors through networking in her community with those who have similar visions. Denise said: “It’s about the children not the money. Build it and funds will come. A unified message gives power.” Denise Bebenek’s husband, Kevin, has also helped with Meagan’s Walk activities.

Denise Bebenek’s husband, Kevin, has also helped with Meagan’s Walk activities.

Presentation 2 - Kartu Lengviau (Lithuania) Ugnius Smalskys, Deputy Chief of Kartu Lengviau, the Lithuanian organization for brain tumour patients and relatives, stated concisely his organization’s challenge: the absence of information and any organizational support for brain tumour patients and their relatives in his country. Prior to the establishment of the Lithuanian brain tumour patient and caregiver organization, it was not possible to find relevant information on brain tumours in that country. Patients had to rely on surgeons and other medical staff. The first step was to select relevant information and to put this information on a web page – http://www.kartulengviau.lt/joomla/pradzia.html There is a section on the website where one can “ask the doctor” and have their questions answered, usually within two to three days. Ugnius had to push the doctors for this service and physician assistants often help with the responses. The second step included spreading the information to patients and relatives by asking the medical staff to provide them with Kartu Lengviau’s contact details and publishing small brochures and providing stands for displaying the brochures. The stands also provide a place for patients to record their comments and questions. While spreading information, Kartu Lengviau is able to gather together the most active patients and families. They have organized regular support groups at one of the three surgical centers in Vilnius, the capital of Lithuania. The organization’s current aims include: ■ setting up regular support groups in each of the three surgical centers; ■ creating a network of Kartu Lengviau in neighboring countries such as Latvia and Estonia and ■ searching for additional funding for their activities

Ugnius Smalskys

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Presentation 3 - Brain Tumour Alliance Australia Matt Pitt, Chair of Brain Tumour Alliance Australia, was the next speaker in this session. His organization was established in 2008. Matt gave some background about the healthcare system in Australia and said the challenge is representing a national group but letting local groups keep their autonomy in a united way. His organization’s strategy includes winning over the locals, supporting local heroes and letting them run their own events such as a wear-a-hat day at a local school. He said being a “teacher”, giving thanks when it was due, and providing educational materials helped promote his organization. International Brain Tumour Awareness Week every October/ November was a wonderful example of promoting cohesiveness. Mary Lovely (American Brain Tumor Association), commented in a short discussion following Matt’s presentation that she felt that online support groups are the future, and there seems to be a movement toward this paralleling the increased use of the Internet.

Matt Pitt of Brain Tumour Alliance Australia

Mary Lovely

Presentation 4 Zimbabwe Brain Tumour Association Christine Mungoshi, Director of the Zimbabwe Brain Tumour Association, said that she has been working with both “order and chaos” to encourage and allow great things to happen to the brain tumour community in her country. Her organization started in 2005, and its development and growth have been influenced by her country’s significant problems. The population in Zimbabwe is approximately 14 million. There are only five registered neurosurgeons for this population and patients will be lucky to get any second opinion. It can take up to thirty days to secure an appointment and there are only three main government hospitals treating brain tumour patients in Zimbabwe. The challenges for sustaining an advocacy organization in her country include: ■ political instability ■ economic instability ■ high inflation in previous years and now deflation ■ fuel and food shortages ■ collapse of the healthcare system ■ migration of health care specialists Participants at the Summit audibly sighed deeply as they heard Christine’s challenges in Zimbabwe. They realized the very substantial difficulties that exist for brain tumour patients in the less developed countries and how we in the more developed countries take so much for granted.

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Christine Mungoshi


Presentation 5 – Singapore Brain Tumour Support Group Melissa Lim from the Singapore Brain Tumour Support Group took the podium next. Melissa said that patients in Singapore are often passive. They listen attentively but do not write down information or ask questions as they are embarrassed and there is also information overload for the patients and their relatives. She provided a list of simple questions that healthcare personnel should ask of brain tumour patients: ■ What are the symptoms? ■ When did they start? ■ What treatment was tried? Melissa said that when receiving a brain tumour diagnosis, patients should be given time to calm down, ask for options and call for reliable support. Patients and their relatives need time to do research and to discuss doubts and seek a second opinion. With regard to understanding their individual management plans, Melissa said that patients should listen attentively, note specific medications and know when to initiate an appointment. She encouraged sharing and discussing concerns with doctors and exploring options for treatment and medications. She cautions patients in Singapore that they do not have to accept the management plans if they want to explore other options.

Melissa Lim

Presentation 6 Brain Tumour Patients In Argentina Dr Jose Maximo Barros from Argentina was the next speaker. He said that there are no brain tumour patient/caregiver organizations in Argentina as in the United States and other countries. “Max” as he is known, is part of the first neuro-oncology registry in Argentina: RAHON, the neuro-oncology chapter of the Argentinian Neurological Society and the Latin American Neuro-Oncology Network. In 2010 RAHON became part of the National Cancer Institute in Argentina. Many institutions have joined RAHON. Max said that they found many discrepancies (approximately 30%) in neuropathology reports. Dr Barros then shared that his youngest brother passed away from a medulloblastoma when he was three years old. Dr Jose Maximo Barros

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DAY 1 Tuesday, 19 November 2013

The Summit Dinner Dinner included a presentation by Dr Virginia Stark Vance on “Thinking outside the box – the story of Avastin for glioblastoma”. Dr Stark-Vance used a clever set of slides to illustrate her view that glioblastoma was like a “criminal” spreading its evil through a city, affecting neighborhoods differently. The “criminal’s” first opponents were pre-existing chemotherapeutic agents. But then Avastin arrives to bolster the fight. Dr Stark Vance reported that Lester, the husband of one of her patients, had read about Avastin and suggested it be added to his wife’s glioblastoma therapy of CPT-11. The wife showed improvement on this treatment, as did a second patient. Following this experience, Dr Henry Friedman urged his institution (Duke University in the United States) to consider a clinical trial combining CPT-11 and Avastin. Twenty-six out of the 29 participants showed at least some improvement. Dr Stark-Vance identified the following questions as still being unanswered: ■ Avastin is active with several cytotoxic agents: temozolomide, carboplatin, BCNU, CPT-11. Which is best? ■ At what point should Avastin be introduced into therapy? ■ Will substitution (or addition) of other drugs increase duration of response? ■ Will PET imaging be necessary to evaluate response?

Dr Virginia Stark-Vance

Presentation to the IBTA from the Childhood Brain Tumour Association of Taiwan (CBTA) During the Summit dinner Tsung-Liang (Johnny) Chao, former First Director of the Childhood Brain Tumour Association of Taiwan (CBTA) presented a plaque to the International Brain Tumour Alliance which was gratefully accepted by IBTA Co-Director Kathy Oliver on behalf of the organisation.

Tsung-Liang (Johnny) Chao presents a plaque to Kathy Oliver who accepted it on behalf of the IBTA.

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DAY 2 Wednesday, 20 November 2013

Workshops Workshop 1 The participants got off to an early start on the second day of the Summit, assembling in five pre-arranged workshops. The first group was asked to consider “How can clinical trials be better organised for brain tumour patients?”. It was led by Jean Arzbaecher, who was one of the IBTA advisors for the Summit and is an advanced practice nurse from Chicago with twenty-seven years’ experience in neuroscience nursing. In reporting back to the plenary session following the workshops Jean said that while her group wanted to see a greater participation in clinical trials they believed there is confusion among the public and doctors about clinical trials and there is also a barrier related to the patient’s control over their own participation in a trial. One suggestion was to undertake unbiased education about trials at the patient’s second visit (they can be too overwhelmed at the first) with the addition of a decision-tree to help patients sort through their choices The group also suggested that each country needs people to help navigate patients through clinical trials. Patients should also be allowed to withdraw from a trial for quality of life reasons. Progression free survival endpoints were regarded as important by the group and can be surrogate measures of overall survival.

IBTA advisor Jean Arzbaecher who facilitated Workshop Group 1

IBTA advisor Mary Ellen Maher (centre) was kept busy writing up notes from Workshop Group 1

Workshop 2 Workshop 2 was asked to discuss “What do brain tumour patients want from pharmaceutical companies in order for companies to be more ‘patient-centric’?” This group was jointly led by the Summit facilitator Markus Wartenberg and Chris Tse, a brain tumour caregiver from New Zealand. Chris has been a long-time advisor to the IBTA. The group focussed on pharma-patient relationships from the patient perspective, rather than pharma-patient group relationships. The key requirement of patients is, of course, a cure. It was suggested that because some pharmaceutical companies companies were not involved in the area that there was a need to increase their awareness about brain tumours and the potential commercial advantages for a company to be involved. For those companies that are involved, the group called for greater collaboration between pharmaceutical companies because of a likelihood of success through combination therapies. The collaboration twenty years ago between industry and academia over HIV/AIDS treatments was regarded as a useful precedent. Pharmaceutical companies should also be encouraged to extend

Chris Tse (New Zealand), IBTA advisor and co-facilitator of Workshop Group 2, who reported back to the plenary session on behalf of the group.

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compassionate access to experimental therapies to patients who might not have met the eligibility criteria for a trial. There was criticism that some companies merely “tick the box” when it comes to claims of patient centricity. Companies need to recognise the patient as the customer, and not the doctor, not the insurance company, nor the government drug-buying agency. Suggestions for greater patient centricity included such pragmatic issues as those which relate to product and packaging design. Patient advocate representatives, rather than patients themselves, might be better suited for pharmaceutical companies’ patient advisory boards because they are “one step removed”. Patients should be told about bad clinical trial results as well as good trial results. They should also be granted access to their own personal (genetic) data if requested. In the developing countries patients had less direct connection with pharmaceutical companies and clinical trials because of a general ignorance about their medications, the availability of generic substitutes and a lack of access to specialists. Instead they are cared for by family or primary care doctors.

Workshop 3 The third workshop, which was a large group of thirteen participants, was asked to consider the question “What do brain tumour patients want from the organisations that represent them?” This discussion was led by Helen Bulbeck from brainstrust (UK) and Paul TonThat, CEO of the National Brain Tumor Society (US). The group first identified what the well-resourced patient and the wellresourced caregiver should ideally have access to. Of importance was that patients needed a team around them, as do caregivers. Gaps identified included: information available in different languages; rehabilitation; psycho-social (including spiritual) support; support for independence; a clear, rigorous care and treatment pathway; resources that are trustworthy and reliable; holistic therapies; and continuity of care. In the representative process it is important to be able to demonstrate “quick wins”. Patients would like to see step-by-step guidance on what will happen along the journey. They want quality assurance to be exercised over the information available on the Internet. Alex Johansson (Sweden) who later reported from this group to the plenary session, identified the following issues that need to be recognised by the groups representing patients: the need to focus on curing the patient, not just the tumour; the loss of independence facing the patient; isolation; a lack of rehabilitation services; a desire for holistic therapies and a need for “safe havens” for patients and caregivers.

Helen Bulbeck (brainstrust, UK), centre, and Workshop Group 3

Alex Johansson (Chair of Svenska Hjarntumorforeningen, the Swedish Brain Tumour Association), who reported back from Workshop Group 3

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Workshop 4 The fourth group discussed “Relationships with other brain tumour patient groups, cancer control organisations and the neurological disease community”. This group was led by Dr Mary Lovely (US) and Hallstein Gravrak (Norway). Mary, who was an IBTA advisor for the Summit, has been a neuroscience nurse for many years and is also a senior advisor to the American Brain Tumor Association (ABTA). Hallstein is a brain tumour survivor. The group discussed the importance of collaboration within and across countries. Different countries had different challenges. For example, Ireland sought to link patients and/or caregivers together and a Northern Ireland support group linked with UK-based brain tumour support groups when Irish paediatric patients travelled to the UK for treatment. Belgium seeks collaboration between all levels. The US had problems with collaboration with the neurological groups because brain tumours are not generally recognised as a neurological disease. However, a US group called the “Alliance of Childhood Cancer” offered broad collaboration. There was discussion about the challenges in collaborating with schools where there is a hesitancy about outside groups “scaring the kids with tales of serious diseases”. In one instance a group achieved acceptance by linking their message to aspects of the school’s mission statement e.g. a decrease in bullying rates, putting one’s faith into action, kids helping kids. There was agreement that collaboration must be strategic and undertaken for the best interests of the patients.

Mary Lovely facilitated Workshop Group 4 about inter-organisation relationships

Workshop 5 The fifth workshop, which was facilitated by Rosie Cashman (Canada) and Patty Anthony (US) was asked to discuss “How can we adequately support people with a low grade or meningioma brain tumour?” Rosie is a Nurse Practitioner and Patty is a Registered Nurse (neuro-oncology nurse clinician).. Both have organised brain tumour patient support groups over many years in their respective countries. The group agreed that the word “benign” has fallen into disfavour and there is a preference to use “non-malignant”, “low grade”, “slow growing”, or “pre-malignant”. In a subsequent discussion it was explained that in English the word “benign” has a similar meaning to “mild” or “not harmful” whereas these tumours can be anything but “not harmful”. One danger for patients with a low grade tumour is that they “might fall off the map” during the period (sometimes quite a substantial number of years) when their tumour was very slow growing and hence not causing significant problems for them. Additionally the group believed that there was sufficient similarity between malignant and non-malignant types for these patients and caregivers to be placed in the same support group. A specific challenge for such patients in some countries is that there can be insurance barriers and they might be excluded from other benefits

Patty Anthony (US), above co-facilitated Workshop Group 5. Justina Smalskiene from Lithuania is pictured to Patty’s right.

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because their tumour is regarded as a “pre-existing condition”. Marriages and family relations can be stressed. Often patients cannot perform the tasks of the job for which they were originally hired and they can experience many years of underemployment or unemployment. People with these types of tumours are also required to report their disability on job applications. Often they cannot access rehabilitation. The group came up with three excellent recommendations: (1) A document to aid in disability assessments should be developed e.g. there should be more information and awareness-raising about seizures, especially in the workplace (also mentioned by IBTA Co-Director Kathy Oliver in the plenary discussion) and cognitive abilities, with input from neuropsychology specialists. (2) We should work with businesses to create jobs appropriate for these brain tumour survivors, including social enterprises (not for profit companies) that employ people with disabilities. (3) Brain tumour organisations should partner with public health organisations to document the prevalence of low grade brain tumours and the disabilities associated with the disease.

Rosie Cashman (Canada), who co-facilitated Workshop Group 5

DAY 2 Wednesday, 20 November 2013

Case Studies After the conclusion of the five workshops the participants re-convened for an hour-long plenary session and report-back from the groups, as well as a general discussion about their findings and suggestions. At the conclusion of the general discussion the participants listened to presentations involving several case studies of successful advocacy campaigns. The first case study was presented by Angela and Neil Dickson from The Brain Tumour Charity (UK). The Dicksons talked about the collaborative “UK HeadSmart – be brain tumour aware” programme, to enhance public and professional awareness of the need for early diagnosis of pediatric brain tumours. This had arisen from instances of delayed diagnosis - sometimes up to thirteen weeks - and involved a cooperative effort at raising awareness and educating medical professionals and the public. The campaign achieved good publicity with 14 million people reached. Information was distributed to all schools in the UK. A new partnership with Toys R Us was established. Improvement milestones were noted: 12-13 weeks to diagnosis at the start of the campaign; pre-launch 9-11 weeks; June 2012 - 7.5 weeks; June 2013 - 6.9 weeks; and 6 weeks in 2014. Neil Dickson believed the campaign succeeded because of the focus – knowing who they were and what they wanted.

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Tina Mitchell Skinner (Hammer Out, UK, now known as Brain Tumour Support), who spoke about the successful campaign to obtain NICE approval of temozolomide in England and Wales.


Tina Mitchell Skinner from Hammer Out Brain Tumours (now Brain Tumour Support) in the UK presented a case study about her involvement in the 2005-2006 process to achieve a recommendation by the National Institute for Health and Care Excellence (NICE) for reimbursement on the UK National Health Service of temozolomide for glioblastoma patients. Tina told how the drug had enabled her husband to survive until their eleventh anniversary and other family events. Various brain tumour charities, including the IBTA, appealed against the initial negative NICE recommendation before a positive decision was ultimately achieved. In her case study, Jennifer Gouchie from the Canadian Alliance of Brain Tumour Organisations (CABTO) outlined their successful campaign around Private Member’s Bill M-235 which mandated the collection of statistics for brain tumour incidence, including both “malignant” and the so-called “benign” tumours and which was passed in 2007. During the campaign, her late son Brandon flew to meet the Canadian Prime Minister behind closed doors to discuss the challenges faced by brain tumour patients. Jennifer and colleagues are involved in the on-going task of seeking the Bill’s full implementation. In a general comment Jennifer outlined how political campaigns can cover a wide range of challenges, such as: ■ asking local government representatives to make an official declaration regarding Brain Tumour Awareness Month (create awareness of the disease) ■ lobbying elected officials for access to equitable drug coverage and supportive care services (home care, rehabilitation and palliative care) ■ approaching legislators regarding the introduction of a bill or motion pertaining to a platform of particular importance to a brain tumour patient group/organization ■ pressuring government into increased funding for brain tumour research In her case study, Lia le Roy from the Belgian Study Group Brain Tumours (Werkgroep Hersentumoren vzw) spoke about several campaigns her group had initiated. They included the production of a Quality Charter for the treatment and support of brain tumour patients and their relatives; emergency procedures for patient care; and a conference for patients and caregivers. These projects were made more difficult in Belgium in particular by the need to work within the three communities in that country: Flemish, French and German and the four languages spoken: Dutch, French, German and some English. Lia’s organisation works closely with The Harvey Cushing Centre which provides psychosocial support for people with brain tumours and they also work with Can Cé-tu, the brain tumour patient organisation of the French speaking part of Belgium.

Jennifer Gouchie (Canada) who spoke about the campaign based around legislation to ensure the counting of all brain tumours.

Lia Le Roy

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DAY 2 Wednesday, 20 November 2013

Exploring some of the unmet needs of the brain tumour community a panel discussion Following these case studies there was a general panel session of 45 minutes involving Johnny Chao (Taiwan), Maureen Daniels (Canada), Wendy Fulcher (UK), Francesca Scropetta (Italy) and Geri-Dee Shaffer (US). The panel was given the task of exploring some of the unmet needs in the brain tumour community. Johnny Chao identified a reluctance in his country for medical students to choose neurosurgery or neuro-oncology as a specialisation, particularly pediatric neurosurgery. Maureen Daniels cited two problems facing patients in Canada: unmet psychosocial needs and inequitable access to drugs and psychosocial assistance. Wendy Fulcher spoke about lack of treatment options, variation in local treatments, regional variation in patient support, access to a patient’s own medical data, and delayed diagnosis in the UK. While NICE had produced guidelines for brain tumour treatments there was much variation in its implementation across the country. In the UK most patient support services are provided by the charities. Geri-Dee Shaffer referred to the rise in the number of community hospitals in the US which may not have brain tumor specialists or adequate patient support. These are perceived to be a low-cost alternative to full-scale hospitals. In the US one of their problems is drug parity for government reimbursement. Francesca Scropetta identified a lack of coordination between brain tumour charities and hospitals, particularly in the pediatric area in Italy. A capacity for a more personalised approach and interdisciplinary teams is also needed in Italy. While everyone can choose the geographic location for their treatment, pediatric hospitals are more available in the north, with hardly any in the south of Italy. In a general discussion period which followed the panel’s contributions, the subject of neurosurgical training and involvement was discussed. Marianne Lee from the Canadian Brain Tumour Foundation described how they had created scholarships to help in this area. Mary Lovely from the American Brain Tumor Association (ABTA) advised that her organisation sponsored student medical awards as well as funding new investigator awards. Wendy Fulcher mentioned that the Barrow Foundation funds UK neurosurgical training. Maureen Daniels said that even acknowledging that brain tumours were a very difficult disease to treat, on the whole the professional community works well together. Christine Mungoshi said that in Zimbabwe not one neurosurgeon had been trained recently because the current neurosurgeons are too overwhelmed with the work already required of them to teach younger doctors, although two new neurosurgeons were now completing their studies in Australia. Dr Wendy Kaye (Students Supporting Brain Tumor Research, US) suggested that telemedicine might be a solution when there is a lack of experienced surgeons. Carol Kruchko (Central Brain Tumor Registry of the United States) said there is also a challenge with coordinating procedures in the US e.g. taking blood tests at hospitals.

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Johnny Chao

Wendy Fulcher

Francesca Scropetta


DAY 2 Wednesday, 20 November 2013

Sharing best practice in brain tumour support and advocacy activities something useful that has worked Following a break for lunch and networking opportunities the Summit participants reassembled in the plenary room to hear eight of their colleagues speak about “something useful that has worked” in their patient advocacy organisations. Alex Johansson (Svenska Hjarntumorforeningen, Sweden) described how a network developed between national cancer patient organisations in his country as a result of the need to achieve better care of cancer patients. The issues identified included prevention, equality and patients’ rights. Alex also recommended the use of humour as a tool to cope with the extremely tough situation faced by brain tumour patients. Nitesh Mohanty (India), who is a caregiver to his wife, described the situation in Mumbai where brain tumour support groups meet monthly. They believe in creative interventions such as the transformative power of art. Making and selling gift cards works both as a creative activity and a funding source. There is an annual art event for children and some of the prizewinning efforts have been printed in the Lancet Oncology. Overall, challenges in India include health literacy issues. Maureen Daniels (Canada) described the emergence of the Gerry and Nancy Pencer Brain Tumour Centre at the Princess Margaret Hospital in Toronto. This comprehensive centre grew from the vision of Gerry Pencer who was a patient and whose family experienced great difficulty in finding the right kind of care. A Patient and Family Advisory Committee (PFAC) meets once a month and provides an opportunity for patients to have a say about what takes place in the Centre. They also engage in research fund raising and have funded projects that might not have been funded otherwise. Karen Risgaard (Denmark) described the emergence of their patient organisation in 2012 which attracted 500 people to its inaugural meeting and was supported by the Roche pharmaceutical company. A meeting of neurosurgeons, neurologists and neuro-oncologists helped to ensure that patients received a common treatment approach. In the subsequent discussion Paul Ton That (US) said that his organisation (National Brain Tumor Society, NBTS) arranges similar meetings and attracted about 300 people for a full-day meeting, and about 150 for a half-day conference. Angela Dickson (The Brain Tumour Charity, UK) said that they organised regional patient information days, which worked better than the bigger national days. They are “more useful, cost less, and take up less time to plan”. Cliona Doyle (Brain Tumour Ireland) described the launch of their organisation in November 2012, following the death of her aunt from a brain tumour and the challenges faced by the family in finding the support resources they needed during her aunt’s journey. The organisation was helped by the involvement of many members of her aunt’s family. They have forged links with the Irish Cancer Society and various hospitals in Ireland.

Nitesh Mohanty (India) supported the transformative power of art which they use in their Mumbai support group.

Maureen Daniels mentioned a very useful (anonymous) quote which advocates could keep in mind: “If you think being small and insignificant doesn’t matter, then try sleeping with a mosquito!”

Karen Risgaard (Denmark) said that 500 people attended her organisation’s inaugural meeting

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They held a patient consultation day at the outset and also have support groups around the country. They found that patients in Ireland want more support services, patients with low grade tumours felt very alone and that there is a shortage of rehabilitation services. Oscar Prieto Martinez (ASATE, Spain) said that his group, incorporated in 2010, produces information brochures for patients and families. In 2011 ASATE signed an agreement for psychological care for patients and families. They also offer rehabilitation services for those whose speech has been affected by brain damage. Oscar is also secretary of the Grupo Español de Pacientes con Cáncer (GEPAC) and concluded his presentation with the words “The greatest pleasure in life is doing what people say you cannot.” Marianne Lee (Canada) concentrated on the basic elements of advocacy. Advocates can act to empower patients, they share the patient’s voice and build relationships. Jennifer Gouchie (Canada) described additional information about CABTO’s efforts to secure the implementation of the legislation requiring the counting of all brain tumours (not just malignant tumours). Her group invited Carol Kruchko from the Central Brain Tumor Registry of the United States (CBTRUS) to visit Canada and explain about the Registry’s work. Carol suggested that they connect with one of her former colleagues, Dr Faith Davis, who had returned to Canada. Dr Davis and CABTO have met recently with Canadian government officials to discuss how the required information can be obtained. Rosemary Wormington (UK), who facilitates brain tumour support groups, referred to an art exhibition that her organisation, Hammer Out Brain Tumours (now Brain Tumour Support), had sponsored. It arose from a support group member’s wish to have his art exhibited. Some of the artwork served as memorials to deceased patients. Rosemary said: “It was a beautiful array of work, and it was a very therapeutic place for patients and families to walk through. It was very educational for the public to come and see the artwork, and hear about what it’s like to live with a brain tumour.” While art can be very gratifying for patients it is also a way of raising funds for support services.

Paul TonThat told the gathering that the NBTS organised both half-day and full-day conferences

Cliona Doyle (Ireland) described the formation of Brain Tumour Ireland by members of her family following her aunt’s death from a brain tumour

Rosemary Wormington (UK) told the gathering about a successful art exhibition of patients’ work that her group had sponsored

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DAY 2 Wednesday, 20 November 2013

Wrap-up In his Summit wrap-up, facilitator Markus Wartenberg thanked all of the speakers for sharing their own experiences and for the lively discussions among the Summit participants. He said he had witnessed great spirit, networking, inspiring stories and dedication to patient support during the two day meeting. IBTA Co-Director Kathy Oliver thanked everyone for their involvement and urged a spirit of international collaboration. She said how delighted she was with the way the Summit had turned out in terms of everyone’s support and attendance. IBTA Chair Denis Strangman said he was gratified to witness all the participants jumping into a high level of discussion so quickly. He felt all would come away from the Summit applying the principles of an informed conscience and would continually ask themselves: “Are we doing the right thing for patients?“ He said: “We cannot ‘rest on our laurels’ but must do the best we can.”

IBTA former Chair Denis Strangman (left) and IBTA Co-Director Kathy Oliver (second from left) were each presented with a commemorative plaque and a book of personal tributes from participants attending the Summit

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DAY 2 Wednesday, 20 November 2013

Conclusion Evaluation Forty-nine of the 64 Summit participants completed a feedback form. Forty-five judged the Summit as “very valuable” and “very well organised”. Forty-eight judged it as an effective use of their time. A majority believed the venue was “very suitable” and most participants rated the food and the hotel facilities as “excellent”. The scientific presentations by Dr Susan Chang on the first day and Dr Virginia Stark-Vance at the Summit dinner were both rated highly. Valuable feedback was given about the individual presentations by participants, and the selection of topics. Participants were specifically asked if any topics were missing from the agenda and a couple of the suggestions were: ■ “Palliative care - although realise this could constitute a Summit all by itself.” ■ “Fundraising or physical activity. Would like to have explored Quality of Life (QOL) and how to assist patients better.” Participants were also asked what was the most valuable aspect of the Summit. Some of the responses were: ■ “The overall interactions, exchange of stories, inspiring movements and collaborations.” ■ “Workshops.” ■ “The gathering of advocates from all parts of the globe to share ideas about a joint passion.” ■ “Meeting other people, hearing their stories and situations.” ■ “Networking, the international perspective.” ■ “Shared perspective, gaining better understanding of the challenges in the world, both unique and common.” ■ Networking. Exchanging ideas and resources.” ■ “Learning the paths that organisations around the world are taking.” ■ “Sharing feedback information.” ■ “Inspirational talks, noble ideas, ideologies.” ■ “Lots of things to take home and practice for the rest of life.” ■ “The awareness, there is a lot to do, although there was also a lot advised.” ■ “Meeting and hearing from the international community.” ■ “Experiences of other groups - sharing information.” The Summit was the first of its kind. Never before had such a group from around the world been brought together in one place. The scientists, the neurosurgeons, the radiation oncologists and the medical oncologists have their regular meetings, but up until the point of the Summit, the brain tumour patient organisations had not. The Summit required a substantial effort by the organisers, particularly the two IBTA Co-Directors, Denis Strangman and Kathy Oliver together with the eleven IBTA advisors: Jean Arzbaecher, Jenny Baker, Rosie Cashman, Maureen Daniels, Carol Knight, Carol Kruchko, Mary Ellen Maher, Sharon Lamb, Mary Lovely, Sally Payne and Chris Tse.

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The Summit could not have been held without the generous support of the sponsoring organisations: ■ Roche ■ Novocure ■ Pediatric Brain Tumor Foundation ■ Lilly ■ GlaxoSmithKline ■ Celldex ■ Accuray ■ The Gerry & Nancy Pencer Brain Trust All participants who required financial assistance with their airfares were given some form of assistance, either in full or in part. The meeting was not a deliberative meeting, in the sense that the participants did not come with a pre-determined organisational view on the contents of a pre-circulated agenda. Nor did the meeting generate a manifesto or a list of tasks for people to implement. Rather, it was essentially a networking and information-sharing experience - the first of its kind in the international brain tumour advocacy community - and we believe that it achieved those objectives. One hopes that the personal links made and the new ideas picked up at the Summit will lead to more efficient and effective organisations in each country represented at Lafayette and help provide the best possible service for brain tumour patients, their caregivers and their families who, after all, are the people we seek to represent.

One of the plenary sessions at the Summit

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First World Summit of Brain Tumour Patient Advocates

Lafayette Park Hotel, Lafayette, California, USA 18, 19 and 20 November 2013

Summit programme Time Topic/Activity

Hours/ Minutes

Speakers and/or responsible persons

Format

Location

MONDAY 18 NOVEMBER 2.00 pm Summit 7 hours Jean Arzbaecher (USA) to 9.00 pm registration and Mary Ellen Maher (USA) 7.00 pm Informal welcome 2 hours to 9.00 pm buffet and networking opportunities

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Lobby of the Lafayette Park Hotel & Spa 3287 Mount Diablo Boulevard Lafayette, CA 94549 Tel 925-283-3700 www.lafayetteparkhotel.com

Buffet (Food will Ben Franklin Room be available until about 9.00pm but 24-hour room service is available at your own expense)


Time Topic/Activity

Hours/ Minutes

Speakers and/or responsible persons

Format

Location

30 minutes

Jean Arzbaecher (USA) and Mary Ellen Maher (USA)

Outside of George Washington Room

TUESDAY 19 NOVEMBER 8.00 am Summit registration to 8.30 am 8.30 am to 8.45 am

Official start of the 15 Summit. Welcome to minutes the Summit, housekeeping and organisational issues

Markus Wartenberg (Germany)

Plenary

George Washington Room

8.45 am to 9.00 am

A short outline of the 15 International Brain minutes Tumour Alliance’s role, mission and activities

Denis Strangman (Australia) and Kathy Oliver (UK)

Plenary

George Washington Room

9.00 am to 9.45 am

Individual, short 45 Markus Wartenberg Plenary introductions from minutes (Germany) facilitates participants

George Washington Room

9.45 am Brain Tumour Therapy 45 Dr Susan Chang (USA) Plenary George Washington Room to 10.30 am Update and Q & A minutes to follow 10.30 am to 11.00 am

Coffee/tea break and networking

30 Buffet minutes

Rear of George Washington Room

11.00 am to 12.30 pm

Setting the scene - an introduction to some of the advocacy issues we face in the brain tumour community today

90 Markus Wartenberg minutes (Germany) - introduction total to the session comprising the below presentations:

George Washington Room

Health Technology Assessment (HTA)

10 minutes

Plenary

Markus Wartenberg (Germany)

Accessing innovative 10 Al Musella (USA) therapies minutes

Caring for the Caregiver

10 minutes

John de Bruin/ Jelle Jan de Vries (Netherlands)

Support and information provision

10 minutes

Mary Lovely (USA)

35


Time Topic/Activity

Hours/ Minutes

Speakers and/or responsible persons

Format

Location

TUESDAY 19 NOVEMBER (CONTINUED)

Personalised medicine: 10 hype versus hope minutes

Kathy Oliver (UK)

Pediatric brain tumours 10 - the challenges minutes

Robin Boettcher (USA)

Help and hope for 10 brain tumour patients minutes in developing countries

Uday Krishna (India)

Discussion

Markus Wartenberg (Germany) to facilitate

12.30 pm Lunch and networking 60 Buffet to 1.30 pm minutes

Ben Franklin Room

1.30 pm The Marketplace to 3.30 pm Session

George Washington Room

10 Markus Wartenberg minutes (Germany) (Introduction)

Plenary

Marketplace Stall 1: 30 minutes Angela and Neil Dickson (UK) Breakaway Fundraising in an era of austerity

George Washington Room

Marketplace Stall 2: 30 minutes Wendy and Marty Kaye (USA) Breakaway Can doctors improve their communication with brain tumour patients?

George Washington Room

Marketplace Stall 3: 30 minutes Jenny Baker (UK) Breakaway Working with volunteers/ succession planning and sustainability of brain tumour patient organisations.

Fire Suite, Room 340

Marketplace Stall 4: 30 minutes Working with industry

Daniel’s Study, Room 222

Marketplace Stall 5: 30 minutes Kristina Knight (USA) Breakaway Social media and the IT revolution

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15 minutes

Markus Wartenberg Breakaway (Germany)

Boardroom


Time Topic/Activity

Hours/ Minutes

Speakers and/or responsible persons

Format

Location

TUESDAY 19 NOVEMBER (CONTINUED)

Marketplace Stall 6: 30 minutes Carl Cadogan (Canada) and Breakaway Working with print Hugh Adams (UK) and broadcast media (including public service broadcasts)

Ben Franklin Room

3..30 pm to 4.00 pm

Brain tumour statistics including a discussion of statistics for brain metastases

30 minutes Carol Kruchko (USA) Plenary including Q&A and discussion

George Washington Room

4.00 pm Coffee/tea break 30 minutes Buffet to 4.30 pm and networking 4.30 pm Brain tumours: 10 minutes Markus Wartenberg Plenary to =4.40 pm challenges and (Germany) solutions – examples - introduction to the session from my own country

Rear of the George Washington Room George Washington Room

4.40 pm Challenge/Solution 1 10 minutes Denise Bebenek (Canada) Plenary to 4.50 pm

George Washington Room

4.50 pm Challenge/Solution 2 10 minutes Ugnius Smalskys (Lithuania) Plenary to 5.00 pm

George Washington Room

5.00 pm Challenge/Solution 3 10 minutes Matt Pitt (Australia) Plenary to 5.10 pm

George Washington Room

5.10 pm Challenge/Solution 4 10 minutes to 5.20 pm

Christine Mungoshi Plenary (Zimbabwe)

George Washington Room

5.20 pm Challenge/Solution 5 10 minutes Melissa Lim (Singapore) Plenary to 5.30 pm

George Washington Room

5.30 pm Challenge/Solution 6 10 minutes to 5.40 pm

George Washington Room

Jose Maximo Barros (Argentina)

Plenary

7.30 pm Summit dinner and 2.5 hours Virginia Stark Vance (USA) Plated, Ben Franklin Room to 10.00 pm networking. After dinner served dinner speaker Dr Virginia Stark-Vance: “Thinking outside the box - the story of Avastin for GBM.”

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Time Topic/Activity

Hours/ Minutes

Speakers and/or responsible persons

Format

Location

Workshops

See below

Workshop

George Washington Room

Workshop

George Washington Room

Workshop

Daniel’s Study, Room 222

WEDNESDAY 20 NOVEMBER 8.15 am Breakaway workshops 75 minutes, See below to 9.30 am with five workshops running in parallel Workshop 1 - Jean Arzbaecher (USA) and How can clinical trials Yutaka Sawamura (Japan) be better organised for - workshop leaders brain tumour patients? Workshop 2 - What do Markus Wartenberg brain tumour patients (Germany) and want from pharmaceutical Chris Tse (New Zealand) companies in order for - workshop leaders companies to be more “patient-centric”? Workshop 3 - What do Helen Bulbeck (UK) and brain tumour patients Paul TonThat (USA) want from the - workshop leaders organisations that represent them?

Workshop 4 – Mary Lovely (USA) and Workshop Relationships with Hallstein Gravrak (Norway) other brain tumour - workshop leaders patient groups, cancer control organisations and the neurological disease community.

Workshop 5 – How can we adequately support people with a low grade or meningioma brain tumour? 9.30 am Reporting back from 60 minutes to 10.30 am the workshops total (10 minutes each report-back plus discussion time)

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Fire Suite, Room 340

Rosie Cashman (Canada) and Patty Anthony (USA) - workshop leaders

Workshop Ben Franklin Room

60 minutes Workshop leaders or presenter/s selected by the individual workshops. Markus Wartenberg (Germany) to facilitate

Plenary

George Washington Room


Time Topic/Activity

Hours/ Minutes

Speakers and/or responsible persons

Format

Location

Plenary

George Washington Room

WEDNESDAY 20 NOVEMBER (CONTINUED) 10.30 am Case studies to 11.15 am

45 minutes in total

Case Study 1 - 10 minutes Angela and HeadSmart: early Including Neil Dickson (UK) diagnosis of pediatric Q&A brain tumours

Plenary

George Washington Room

Case Study 2 - 10 minutes Tina Mitchell Skinner (UK) The temozolomide including experience: an Q&A example of patient involvement in HTA

Plenary

George Washington Room

Case Study 3 - 10 minutes Lia Le Roy (Belgium) and Political campaigns to including Jennifer Gouchie (Canada) improve the journey for Q&A brain tumour patients: two examples

Plenary

George Washington Room

Plenary

George Washington Room

Discussion 15 minutes 11.15 am to 11.45 am

Coffee/tea break 30 minutes Buffet and networking

11.45 am Exploring some of the 45 minutes to 12.30 pm unmet needs of the brain tumour community 12.30 pm to 2.00 pm

Markus Wartenberg (Germany) to facilitate

Panel Discussants: Johnny Chao (Taiwan) Maureen Daniels (Canada) Wendy Fulcher (UK) Francesca Scropetta (Italy) Geri-Dee Shaffer (USA)

Lunch and networking. 90 minutes N/A Opportunity to also meet the representatives of the Summit sponsoring organisations

Plenary

Rear of George Washington Room George Washington Room

Buffet Ben Franklin Room

2.00 pm Sharing best practice 90 minutes Markus Wartenberg Plenary to 3.30 pm in brain tumour (Germany) support and (to introduce and facilitate. advocacy activities - something useful that has worked

George Washington Room

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Time Topic/Activity

Hours/ Minutes

Speakers and/or responsible persons

Format

Location

WEDNESDAY 20 NOVEMBER (CONTINUED) Organisation 1

10 minutes Alex Johansson (Sweden) including Q&A

Plenary

George Washington Room

Organisation 2

10 minutes Nitesh Mohanty (India) including Q&A

Plenary

George Washington Room

Organisation 3

10 minutes Henriette Breunis (Canada) Plenary including Q&A

George Washington Room

Organisation 4

10 minutes Karen Risgaard (Denmark) Including Q&A

George Washington Room

Organisation 5

10 minutes Cliona Doyle (Ireland) Plenary including Q&A

George Washington Room

Organisation 6

10 minutes Oscar Prieto Martinez Including (Spain) Q&A

George Washington Room

Organisation 7

10 minutes Marianne Lee (Canada) Plenary including Q&A

George Washington Room

Organisation 8

10 minutes

George Washington Room

3.30 pm to 4.00 pm

Coffee/tea break 30 minutes Buffet and networking

Rear of George Washington Room

4.00 pm to 5.00 pm

Tying up loose ends: 60 minutes Markus Wartenberg Plenary general plenary (Germany) facilitates discussion about brain tumour challenges around the world

George Washington Room

5.00 pm Summary and close 30 minutes to 5.30 pm 5.30 pm

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SUMMIT ENDS

Rosemary Wormington (UK)

Plenary

Plenary

Plenary

Markus Wartenberg Plenary (Germany), Denis Strangman (Australia) and Kathy Oliver (UK)

George Washington Room


Participants

Patty Anthony (United States) Hugh Adams (United Kingdom) Campaign manager, Brain Tumour Research ............................................................ Launched in 2009, the charity Brain Tumour Research was established specifically to raise substantial funds for brain tumour research. It represents the united campaign voice of its 21 member charities but operates as a separate entity to the member charities, who are committed to working together to achieve a common goal, namely to raise funds for research into the prevention and treatment of brain tumours, as well as ultimately finding a cure. Within its first year Brain Tumour Research established its first Centre of Excellence in June 2010. The centre at the University of Portsmouth employs the U.K’s largest team of scientists conducting the UK’s most comprehensive programme of brain tumour research. The charity’s mission is to support seven such centres throughout the UK, providing a continuous and sustainable funding stream of £1million a year to each centre so that they can accelerate progress into the scientific understanding of the behaviour of these tumours, advance treatments and ultimately find a cure for this devastating disease. Brain Tumour Research and its member charities have led the lobbying of the British Government and national cancer charities for greater and more equitable support and established the Brain Tumour All Party Parliamentary Group in July 2005 for which they provide the secretariat. Following a long career in television Hugh joined Brain Tumour Research in October 2010 and has played a significant role in the charity’s rapid growth. He now co-ordinates the fundraising campaigns including the famous Wear A Hat Day, the U.K’s only national brain tumour awareness event that generates awareness of and funds for sustainable and continuous research into brain tumours. Now approaching its fifth year Wear A Hat Day always falls at the end of March - National Brain Tumour Awareness Month. Other campaigns include Host for Hope, Conquer it Together and Sponsor a Day each tasked with raising £1miilion to fund a new Centre of Hope dedicated to brain tumour research. Hugh also manages celebrity liaison for the charity and has enlisted the support of Hollywood stars including Gillian Anderson and Brigitte Nielsen as well as household names from the world of sport, entertainment, fashion and fine dining.

Founder, Central NJ Brain Tumor Support and Resource Center ............................................................ Patricia Anthony is a registered nurse who has compassionately cared for brain tumor patients, families, and caregivers for over 22 years. She earned her bachelors degree in nursing from Kean University and received her certification in neuroscience nursing over 14 years ago. For the past 18 years, Patty has worked for the JFK Brain Tumor Center. Her work as a neuro-oncology nurse clinician has been very rewarding. The hospital and office-based practice has allowed her to get to know her patients and families on a personal level and provide a high level of patient care. She has participated in over twenty brain tumor clinical trials. Her knowledge and expertise ranges from neurological surgery, clinical trials, standard of care treatment for all types of brain tumors, Gamma Knife, and support groups. Patty has spoken locally, regionally, and nationally on various brain tumor issues. She is recognized nationally and locally for her work with the Central NJ Brain Tumor Support and Resource Center, which she founded 21 years ago. She is also the facilitator for the American Association of Neuroscience Nurses special focus group on brain tumors. Patty has completed many brain tumor walks and most recently 13.1 miles to raise money for brain tumor awareness. Although Patty enjoys her work with the brain tumor population, her biggest love is being a mom to three beautiful girls. She resides in Green Brook, NJ with her husband and daughters.

Jean Arzbaecher

(United States)

IBTA Advisor and Clinical Nurse Specialist in Neuro Oncology, University of Chicago Brain Tumor Center ............................................................ Jean Arzbaecher is an advanced practice nurse living in Chicago. 41


She currently works as a clinical nurse specialist in neuro-oncology at the University of Chicago brain tumor center. Jean has spent her entire career (27 years) in neuroscience nursing, and has worked exclusively in brain tumor care for eight years. Jean is active in the US neuroscience nursing organization AANN (American Association of Neuroscience Nurses). She has served as the local chapter president, as well as the special focus group facilitator for the neuro oncology group. She has presented numerous lectures on brain tumor topics both locally and nationally. She has published in peer reviewed journals, contributed to the AANN core curriculum and written a book chapter for the Oncology Nursing Society. Jean started a brain tumor support group three years ago and facilitates a monthly meeting of survivors and caregivers. The group currently has over 100 members, and usually has between 30 and 50 participants at the monthly meetings. Jean serves as an advisor to the IBTA. She wrote an article for the IBTA’s 2013 Brain Tumour magazine, and also assists in distributing information about the organization annually at the ASCO meeting. She is excited to be participating in this very important world summit.

All these have brought valuable insights of the services provided by national, regional and local voluntary and community groups and a passion for the difference their efforts can make to people’s lives and wellbeing. Jenny was awarded the Order of the British Empire in 2006 in recognition of her services to the heritage, volunteering and community and is a Fellow of the Royal Society of Arts, UK. Now in active retirement Jenny is Chair of Healthwatch Bucks, the new England-wide network of independent patient and carer ‘watchdogs’ within the new National Health Service structures. She is also a non-executive Director of a local museum and arts trust as well as acting as a volunteer adviser for the International Brain Tumour Alliance.

Jose Maximo Barros (Argentina)

.............................................................

Jenny Baker (United Kingdom) IBTA advisor and former Chief Executive of Brain Tumour UK ............................................................. The loss of her elder son, Stephen, aged 24, to a glioblastoma in October 2004, was the reason behind Jenny’s application and appointment in March 2006 as Chief Executive of Brain Tumour UK. Over the next six years Jenny turned around the organisation from a small charity in deficit to what it had become by her retirement at the end of 2012 - a respected, needs-led, professional and fast-growing not-for-profit with an annual turnover of £2.4 million; an active helpline for patients and carers handling 3,000 calls or emails per annum; and a growing network of 27 patient groups across the UK. Previously, Jenny had spent her career in senior voluntary sector roles, notably with the National Trust for Buildings of Historic Interest and Places of Natural Beauty, for the last 14 years as its national lead on community development and volunteering, diversity and outreach. Jenny has wide-ranging interests in health, heritage and environmental issues and has served on many national government and advisory committees and in non - executive director/trustee capacities for various national and local charities.

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José Máximo was born in Buenos Aires, Argentina, in 1979. Married with Ines since 2005 and he has two boys, Segundo and Jerónimo. He is the oldest of six brothers, Juan Ignacio (32), Trinidad (31), Rosario (27), Carlos (21) and Octavio who passed away in 1998 at the age of three, after a year figthing with a medulloblastoma. His father is an architect and his mother is a literature teacher, and both have worked with Natali Dafne Flexer Foundation for many years helping children with cancer. José graduated from Buenos Aires University School of Medicine after which he completed a residency in Radiation Oncology with a thesis in adult medulloblastoma, and post graduate studies in Medical Oncology at Argentinian Catholic University with a thesis in glioblastoma. Now he works at Hospital Universitario Austral/Vidt Centro Médico and Hospital Guemes in Buenos Aires. He actively participates in brain tumor conferences as a lecturer and has presented papers at national and international meetings. He is member of ASCO and ESTRO as well as national societies of Clinical Oncology and Radiation Oncology. Actually he is part of the first neuro oncology registry in Argentina (RAHON), the neurooncology chapter of the Argentinian Neurological Society and RedLano (Latin American Neuro-Oncology Network). In Argentina there are no support groups for adult patients with brain tumors so this First World Summit will be an excellent opportunity to learn from different parts of the world and many experiences. Maximo is very grateful to Denis and Kathy for this unique opportunuty and hopes to add Argentinian patients to this great movement for patients with brain tumors.


Denise Bebenek

(Canada)

Kevin Bebenek (Canada)

Leader and Founder of Meagan’s Walk: Creating a Circle of Hope

Meagan’s Walk: Creating a Circle of Hope

............................................................

.............................................................

Denise Bebenek is the founder, leader, and driving force behind Meagan’s Walk: Creating a Circle of Hope. This special project is named in memory of her daughter, Meagan, who at just five years old died from a rare type of cancerous brain tumour. From its humble beginnings ten years ago, Meagan’s Walk has raised an astounding total of more than $3 million for paediatric brain tumour research. During that time it has remained a grassroots organization, focused on the well being and empowerment of all children and families. Meagan’s diagnosis was the start of a devastating journey for the Bebenek family. After Meagan succumbed to her illness, Denise decided she must come back to the hospital, not alone, but with others. She envisioned a “circle of hope” as one hand joined another, surrounding the hospital and giving a clear and simple sign of support to the children and their families within. With the support of family and friends, Meagan’s Walk was born. In addition to the yearly Mother’s Day Walk, Meagan’s Walk has expanded to include school programs, community fundraisers, a yearly Crane Ceremony, and an annual Gala. The spirit and purpose of Meagan’s Walk is a combination of Denise’s personal experiences and professional background. A graduate of the University of Western Ontario, she is a former school teacher and has worked with troubled youth and children. Denise is a prominent and generous participant in broadcast fundraising campaigns including CTV’s “Night of Miracles,” and has been featured in many media articles. She is a tireless advocate for families who are touched by brain tumours, and for the empowerment of all children to help one another. She is honoured to have received numerous awards for her good works - including being named one of Canada’s Most Powerful Women: Top 100 by the Women’s Executive Network; The Women’s Post Glass Slipper Award; the Etobicoke Urban Hero Award; and the Province of Ontario Volunteer Service Award. Denise is the recipient of Queen Elizabeth Diamond Jubilee Medal – she was nominated by people who felt she had made an outstanding contribution to her community and to Canada. She now most recently has been invited to serve on the Board of Directors of De La Salle Oaklands - a well known and established private school in Toronto. Denise has a passion for music and family, and devotes her work days to her varied, hectic and rewarding duties at Meagan’s Walk: Creating a Circle of Hope.

In 2001, Kevin Bebenek`s youngest child, Meagan, died six months following a diagnosis of brain stem glioma. The Bebenek family started Meagan`s Walk: Creating a Circle of Hope, named for their daughter, and as a way to raise hope and awareness about paediatric brain tumours, and funds to further research into understanding and treatment of brain tumours. Meagan`s Walk has now contributed more than $3 million to the Arthur and Sonia Labatt Brain Tumour Research Centre in Toronto, which hosts the only paediatric research program in Canada, and is now one of the largest brain tumour research centres in the world. Kevin is a Professional Engineer with more than 25 years experience and expertise in the planning, design, maintenance, and operations of transportation systems. Kevin and his wife Denise and their son and daughter live in Toronto, Ontario, Canada.

Robin Boettcher (United States) President and CEO – Pediatric Brain Tumor Foundation (PBTF) ............................................................. Robin Boettcher, with 30 years of experience in health nonprofit management and communications, is charged with leading the world’s largest non-government funder of children’s brain tumor research and significantly increasing support for the 28,000 affected patients and their families. Since joining the PBTF in September 2012, Robin has led the Board of Directors and staff to develop a three-year strategic plan calling for significant growth that will result in more research support and services for families. Prior to joining the PBTF, Robin served as vice president of chapter and community partnerships for the National Parkinson Foundation 43


in Miami. Her accomplishments included establishing a new Chapter Services Department and launching NPF’s first national signature fundraiser, a walk for Parkinson’s disease. Robin also previously served as a national field director and executive director for the Leukemia & Lymphoma Society and as president of the National Multiple Sclerosis Society’s Eastern North Carolina Chapter. She brings experience in all areas of nonprofit management, from finance and operations to fundraising and staff and board development. Before beginning her nonprofit career, Robin worked in the media and public relations, including more than a decade as an Associated Press reporter. A native of Hamilton, Ohio, Robin holds a journalism degree from Eastern Kentucky University.

In my experience being a member of PFAC makes me feel good. I am happy that PFAC makes decisions that benefit the Centre and the patients, I feel happy being among like-minded people dedicating their time and effort, and I am proud to be with people who put their heads together and make things happen. I’ve been encouraged to think about issues from the perspective of brain tumour patients and to share my experiences as caregiver of my husband who was diagnosed with a GBM in 1999 and passed away a year later. Since 2003 I continue, together with Maureen Daniels, to represent the Gerry and Nancy Pencer Brain Trust which maintains its position as an active participant in the Canadian Alliance of Brain Tumour Organizations (CABTO). In my professional life I am clinical research coordinator in the Princess Margaret Cancer Centre focusing on the effects of cancer and its treatment on the aging population.

Henriette Breunis (Canada) Patient and Family Advisory Committee Gerry & Nancy Pencer Brain Tumor Centre .............................................................

Helen Bulbeck (United Kingdom) brainstrust .............................................................

“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” (Margaret Mead). In the past 12 years of being a member of the Patient and Family Advisory Committee (PFAC) of the Gerry& Nancy Pencer Brain Tumor Centre I have had the distinct honor and privilege of working with truly wonderful people, dedicated to make a difference in the lives of brain tumour patients and their families. It is hard to imagine what the Gerry and Nancy Pencer Brain Tumor Centre would look like without the enthusiasm of PFAC members and their willingness to help. The Pencer Centre’s approach is quite unique and a successfully operating committee of patients and family members donating their expertise and time is unparalleled in the world. Since its initiation PFAC has had a growing impact on helping to determine and to meet the support needs of brain tumour patients and families. PFAC has been influential in different aspects dealing with patient needs, for instance developing the patient information binder, and fundraising. “Head for a Cure” is the annual 5 kilometer walk to raise funds for the Pencer Brain Tumour Centre. Since the initiation in 2002 I have been deeply involved in this project. I am proud that we raised more than one million Dollars to fund worthwhile initiatives and research projects, in particular the Adam Coules Research Grant.

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Helen has become immersed in the ‘world’ of cancer. Her daughter was diagnosed with a brain tumour in 2004 and Helen was diagnosed with head and neck cancer in 2007. The prognosis for both is, following treatment, good. These events have changed the direction of Helen’s life; she is now director of a national brain cancer charity which she founded in 2006. Helen uses the experience of being a patient, relative, member of the public and a carer to support thousands of patients who have brain cancer. She works with a significant number of cancer-related institutions, professionals and charities, to ensure that she provides the most up to date, relevant and appropriate information. This 360 degree view means that she is well placed to understand the perspectives of patients, carers and healthcare professionals. Her roles in brainstrust and as a consumer representative with various bodies are as a disseminator of information and the provision of a network and community, so that she can provide advice on achieving effective consumer involvement and creating a voice. As founder/director of brainstrust, Helen’s key drivers are the patients, their carers and their healthcare professionals, with whom she interacts daily. Consumers provide insights and expertise to improve the relevance of the research to problems faced by patients and the wider public; there is nothing as important as ensuring that the public voice is heard. Her ethos of ‘none of us is


as smart as all of us’ is a core value for her. Elemental to Helen’s work is high performance coaching. This sets brainstrust apart. When we are no longer to able to change a situation we are challenged to change ourselves. You are the person who is ultimately going to have the greatest impact on your life. The coaching relationship enables people to face these challenges, so that they learn how to develop resilience and utilise resources to their full potential. Helen stays up to date with relevant research, ensuring her reading is not brain centric. She works closely with other cancer charities and organisations and is working with the National Cancer Registry on the development of a patient information data portal and with a range of centres on developing a network of brain tumour tissue banking. The skills she has developed whilst studying for her PhD means that she is tenacious in spirit, but with a listening ear.

and support of the Black Business & Professional Association and many others who worked and were involved in youth issues across the Province. Carl believes in voluntary action, and was one of the founding Board Members of Eva’s Place - North York Emergency Home for Youth, and a founding Board Member of Pillar Non Profit Network in London (Ontario), the Nathaniel Dett Chorale in Toronto and he is currently the Treasurer of the Manya Krobo Youth Coordinating Council, a group that supports work in Ghana, specifically in the Manya Krobo Traditional Area in the Eastern Region of Ghana; the priority areas are youth capacity building, education, food security and health.

Rosemary Cashman (Canada) IBTA Advisor and BC Cancer Agency

Carl Cadogan (Canada) CEO – Brain Tumour Foundation of Canada ............................................................ Carl Cadogan started his role as CEO at Brain Tumour Foundation of Canada on April 1, 2013, having recently been the Executive Director of Polycultural Immigrant & Community Services in Toronto, an organization that served foreign trained professionals and families new to Canada in assisting them in their settlement and integration. Before joining Polycultural Immigrant & Community Services, Carl was the Program Director for the Commonwealth Association for Public Administration and Management (CAPAM) an International NGO where he was responsible for supporting CAPAM’s vast international membership association of senior public officials, both appointed and elected. Carl was the Executive Director of Nokee Kwe Occupational Skill Development Inc, a London (Ontario) based organization which serves the Aboriginal Community of South Western Ontario, specifically in assisting the On and off-Reserve community in securing employment and training. Carl was also the Vice President of the YMCA of Greater Toronto where he worked in all aspects of YMCA programming for over fifteen years, including the development of one of the very first Mentoring Program in Toronto – the YMCA Black Achievers Program, designed to serve black youth in Toronto,. This program was created in partnership

............................................................ Rosemary Cashman MA, MSc(A),NP (A) is a Nurse Practitioner at the BC Cancer Agency in Vancouver, British Columbia and works directly with brain tumour patients and their families. In addition to her responsibilities in the clinic, her activities include: the production of Headlines, a quarterly patient newsletter; facilitation of a patient and family caregiver support group; development and co-direction of a Patient Family Advisory Council; planning and implementation of a biannual Patient Information Day; initiation and implementation of research projects related to improved patient care and caregiver support; publication of articles and book chapters related to neuro-oncology. She is originally from the United States, but moved to Canada in 1986, where she lived first in Montreal and Toronto before settling in Vancouver in 2005. She is an Adjunct Professor at the University of British Columbia, Faculty of Nursing, and also serves on the Board of Directors of the Brain Tumour Foundation of Canada, a national advocacy organization dedicated to support, education, information and research. She has been an active partner of IBTA since its founding meeting in Edinburgh, UK, in 2005.

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Susan Chang (United States) Professor of Neurological Surgery, University of California, San Francisco, Comprehensive Cancer Center ............................................................. Dr Susan Chang is Professor in Residence and Vice Chair of Neurological Surgery, Lai Wan Kan Endowed Chair, Director, Division of Neuro-Oncology and Program Member, at the University of California, San Francisco, Comprehensive Cancer Center. She will give an overview presentation during the first session of the Summit. Dr. Chang performs clinical trials of brain tumor therapy protocols and experimental therapeutic regimens for adult patients. In addition to research into developing novel and effective therapeutic strategies for the treatment of patients with primary brain tumors, her research goals have expanded to include the evaluation of novel imaging techniques that may influence treatment selection for patients. She has recently been co-recipient of a SPORE grant for evaluating the role of magnetic resonance spectroscopy in diagnosing tumors and evaluating therapeutic interventions. Dr. Chang is a key preceptor training clinical and research fellows in the BTRC about conducting clinical trials and analyzing and interpreting clinical-trial data. With Dr. Kathleen Lamborn, she designed and leads a Seminar on Evidence-Based Medicine. Dr Chang has been a frequent presenter at brain tumour patient and caregiver meetings.

Aeronautical Research Lab, a major force in propulsion systems since 1980. He got an MS in Aerospace Engineering at the University of Michigan, Ann Arbor in 1990 . His wife Wendy is a retired mathematics teacher. Their son Alan was diagnosed with a medulloblastoma in 1998 (at ten years old) and passed away in 2006. During the period of treatment, most parents feel fear and helplessness for the brain tumour is not common and not so much information can be found. In 2000, a group of the parents whose children were brain tumor patients under the conduct of social workers, medical professionals and nurses at Veteran General Hospital organised the Childhood Brain Tumor Association of Taiwan (CBTA). The purpose is to help children with brain tumours and their parents to have information and power to face the disease so that no one feels alone when fighting the illness. Tsung-Liang was elected to be the first director. CBTA has elected five directors in 13 years. The social workers and volunteers of CBTA have all been from Taiwan and help the brain tumour children and parents in treatment support, schoolmate brain tumour education and occupational training. CBTA has held many meaningful activities this year under its current director Ms. Lilyan Song , including brain tumour children self-development camps, parents experience sharing meetings, brain tumour children summer camp, etc. CBTA will keep going on joining the international relationship organizations to learn more knowledge to provide brain tumour children and parents a better life.

Maureen Daniels (Canada) IBTA Advisor and Coordinator of The Gerry & Nancy Pencer Brain Tumor Centre .............................................................

Tsung-Liang (Johnny) Chao (Taiwan) Former First Director of the Childhood Brain Tumour Association of Taiwan (CBTA) ............................................................. Tsung-Liang (Johnny) Chao, is a retired military officer (Lt. Col) of Taiwan who also was an aeronautical engineer in the National

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Maureen Daniels, a registered nurse, has been Coordinator of The Gerry & Nancy Pencer Brain Tumor Centre at Princess Margaret Cancer Centre, University Health Network, in Toronto, Canada for 15 years. Prior to that she spent a decade working in neurosurgical intensive care. She has been a facilitator of support groups for patients living with brain tumors and their families for over 20 years. Throughout her career, Maureen has been extensively involved in patient education and program planning, In addition, Maureen works with The Canadian Alliance of Brain Tumour Organizations (CABTO) an organization which provides a patient’s perspective on


issues of importance for patients and families affected by a brain tumour, along with doing advocacy work at both the national and international level.

Jelle Jan de Vries (Netherlands) Dutch Workgroup Brain Tumors Cerebraal (Werkgroep Hersentumoren Cerebraal)

John de Bruin (Netherlands) Dutch Workgroup Brain Tumors Cerebraal (Werkgroep Hersentumoren Cerebraal) ............................................................ Currently I am living in Lexmond in Holland. In January 2001 my wife Astrid, at the age of 35, was diagnosed with a brain tumour. This was after she had an epileptic seizure. Within two weeks, she was operated on and they were able to remove a big part of the tumour. After the operation the headaches and the tinnitus disappeared but instead she got character changes. After the operation she did not show as much of her emotions as she did before. At first it seemed like it was going well and we could go on with our family. We had three daughters, age four, six and seven. In the beginning of 2002 the impact of the brain tumour was worse and soon it went downhill. Astrid passed away in May 2002, only 16 months after her diagnosis. After the operation we still had a lot of questions remaining. Most of them were about how we should handle our new situation, so in the autumn of 2001 we visited the gatherings of the Dutch Workgroup Brain Tumours Cerebraal (Werkgroep Hersentumoren Cerebraal). Together with my wife, we went to two of their meetings. We got a lot of support from the contact with others. After my wife passed away I became a member of the workgroup. Since then I have been a co-organizer of five national meetings each year. During these meetings participants are able to ask questions and there is a speaker who comes and tells us something related to the subject of brain tumours. This takes place in the morning. In the afternoon there are discussion groups for participants where they can exchange their personal experiences. At these kind of meetings mostly around 50 people are present. We also support a Facebook group and offer contact through phone or email for people seeking contact. Every year I also take part in organizing the Public Day Brain Tumours (Publieksdag Hersentumoren). On this day there are around 250 participants and there are 15 speakers. Nowadays my two youngest daughters still live at home and I have a new partner. I have a managerial position in the logistics sector.

............................................................. In 1994 my partner ‘Alie’ was, at age 27 years, diagnosed with a tumor close to the pituitary gland. She was operated on several times, and also had radiotherapy. The consequences of the treatments where severe, she was temporarily partly paralyzed, and in the last few years of her life she was in a kind of a coma-situation. Unfortunately she passed away five years after the diagnosis. Immediately after the diagnosis we became member of the Dutch Workgroup Brain Tumors Cerebraal (Werkgroep Hersentumoren Cerebraal). Soon after joining I became a volunteer, and for some years I was one of the two chairmen. At the present time I am a member of the executive board. The Workgroup Brain Tumors Cerebraal organizes five meetings a year, with about 50 people attending. During the full-day program we offer a qualified speaker in the morning, and in the afternoon we have several discussion groups. We operate a Brain Tumor Contact Group on Facebook, and are available for support by email of telephone. We also take part in the organization of the yearly ‘Public day brain tumors’ (Publieksdag Hersentumoren), with about 15 different qualified speakers where about 250 people attend. After Alie passed away I took some time off, and circumnavigated the world with my sailboat. During this trip I met my current Australian partner, and we live together with our son in The Netherlands. At the moment I am a project manager, managing IT projects in the building industry.

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Angela and Neil Dickson (United Kingdom)

Cliona Doyle

Founders of the Samantha Dickson Brain Tumour Trust (now The Brain Tumour Charity) .............................................................

Communications and Advocacy - Brain Tumour Ireland

Angela and Neil’s first involvement with brain tumours began when their 16 year old daughter, Samantha, was diagnosed with a malignant brain tumour in 1996. Horrified by the lack of research and patient support for the disease in the UK, they founded the Samantha Dickson Brain Tumour Trust (SDBTT), offering a vital link for patients diagnosed with a brain tumour and their families, and funding four top quality research projects before the end of their first year. Neil’s expertise as a businessman (running his own aviation group of companies) and Angela’s empathy with brain tumour patients and families, gave them the encouragement and determination to do something positive to help patients diagnosed with this devastating disease through support and research. The charity soon became the largest brain tumour charity in the UK, and has raised over £12 million, funding £8 million to date in high quality research. The research led to a number of international breakthroughs and included the formation of the HeadSmart Campaign into the early diagnosis of childhood brain tumours in the United Kingdom. This successful campaign has reduced the average time of diagnosis for children with a brain tumour from ten weeks to seven since it started in June 2011. Further success was achieved with the setting up of the first centre of excellence for brain tumour research in the UK at University College London in 2010. This centre has already achieved a number of breakthroughs, one of which has proceeded to a Phase II clinical trial. SDBTT became the first UK brain tumour charity to be recognised by the Association of Medical Research Charities (AMRC), and has received a number of commendations for it’s first class Medical and Scientific Peer Review Process. Over the last fifteen years, the charity has established a first-class patient support service, helping thousands of patients and families. National Information days are held throughout the UK and to date more than 20 cities have been covered. In August 2012 the charity changed it’s name to The Brain Tumour Charity, and in November of the same year merged with the second largest charity in the UK, Brain Tumour UK and the Joseph Foote Foundation. Neil and Angela play an active role in the newly merged charity which continues to grow. This year will see the largest investment by the charity into brain tumour research within Europe.

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(Ireland)

............................................................. Cliona Doyle is one of the founder members of Brain Tumour Ireland, which was launched during International Brain Tumour Awareness Week in November 2012. The organisation was set up by a family group in memory of Cliona’s aunt, Ronnie Fehily, who sadly passed away as a result of a brain tumour in early 2012. Brain Tumour Ireland’s goals are: to raise awareness of and promote education about brain tumours in Ireland; to provide information and support to brain tumour patients and their families; and to promote and fund medical research into brain tumours. In its first year, Brain Tumour Ireland held a successful launch event which introduced the organisation to the public, and raised awareness of the incidence of brain tumours in Ireland. The organisation subsequently held a Brain Tumour Consultation Day which brought members of the Irish brain tumour community together for the first time to discuss the needs of both patients and medical professionals in Ireland. One of the main issues arising from this meeting was the need for better support for patients, families and carers; and so Brain Tumour Ireland is working on expanding the existing network of brain tumour support groups across the country. Currently there are groups in Dublin, Cork and Galway. Brain Tumour Ireland has also been invited by the Irish Cancer Society to represent brain tumour patients and carers on a National Brain Tumour Working Group. The organisation hopes to use this platform to push for increased funding for brain tumour research, and to highlight the specific needs of brain tumour patients. Cliona, who is living in Dublin, has a proven commitment to public service through voluntary work and involvement in political and civil society campaigns. She is a public affairs and political communications professional with over seven years’ experience. She holds a postgraduate degree in European Studies and an undergraduate degree in Social Science from University College, Dublin, Ireland. She is currently working in politics for a member of the Irish Parliament. Cliona’s role in Brain Tumour Ireland includes communications and advocacy. She is responsible for all media relations and PR aspects of the organisation. She is also working as part of the advocacy team on a long term project seeking to implement public policy changes to improve the situation for Brain Tumour patients in Ireland.


Wendy Fulcher (United Kingdom)

Jennifer Gouchie (Canada)

Chairman of Brain Tumour Research (BTR)

Chairperson, Canadian Alliance of Brain Tumour Organisations (CABTO)

............................................................

............................................................. Wendy Fulcher is a founding Trustee and Chairman of Brain Tumour Research (BTR). Brain Tumour Research represents the united campaign voice of its 21 member charities. Launched in 2009, the charity Brain Tumour Research was established specifically to raise substantial funds for brain tumour research and operates as a separate entity to the member charities, who are committed to working together to achieve a common goal, namely to raise funds for research into the prevention and treatment of brain tumours, as well as ultimately finding a cure. Brain Tumour Research already supports the UK’s largest team of scientists conducting the UK’s most comprehensive programme of brain tumour research at their first Centre of Excellence in the University of Portsmouth. Our mission is to support seven such centres throughout the UK, providing a continuous and sustainable funding stream of £1million a year to each centre so that they can accelerate progress into the scientific understanding of the behaviour of these tumours. Wendy founded the Brain Tumour Research Campaign, one of the member charities, after her husband John died from a brain tumour in 2001, together with his neurosurgeon, Mr Kevin O’Neill. The BTRC’s purpose is to fund research at Charing Cross Hospital, the medical campus for Imperial College London, and one of the Imperial College Healthcare NHS Trust hospitals. In the nine years since they began the campaign, they have raised over £1.5 million and established a Molecular Neuro-oncology Laboratory, as well as funding several fellowships and equipment in both the scientific and clinical fields. Wendy was a member of the Brain/CNS Clinical Studies group for NCRI (National Cancer Research Institute) for five years and currently serves as a third sector member of the CNS Site Specific Clinical Reference Group (SSCRG) for the National Cancer Intelligence Network (NCIN). She also plays an active role through both BTRC and Brain Tumour Research in lobbying the British government and national cancer charities for greater and more equitable support for brain tumour research through the Brain Tumour All Party Parliamentary Group, as well as working to raise public awareness of the desperate need for more research funding in the brain tumour field.

Jennifer Gouchie, a veteran journalist and business owner from Moncton, New Brunswick, Canada, was thrust into the brain tumour world in 1998 when her four-year-old son Brandon was diagnosed with a brain tumour. She immediately became involved with the Maritime Chapter of the Brain Tumour Research Assistance and Information Network (b.r.a.i.n.child) at the IWK Children’s Hospital where Brandon was undergoing treatment. The following year she was appointed chairperson of b.r.a.i.n.child; a volunteer organization which provides support, education and information to more than 100 families throughout the Maritime Provinces. In early 2000, Jennifer was named the b.r.a.i.n.child representative to the Canadian Alliance of Brain Tumour Organizations (CABTO); an alliance of volunteer organizations dedicated to enhancing the quality of life of brain tumour patients and their families. She eventually became chairperson of that group as well and, as a result of her involvement with CABTO; played an instrumental role in the creation of a Private Member’s Bill calling for a uniform national standard in the reporting, collection and surveillance of all brain and CNS tumours – malignant and non-malignant. In fact, she and Brandon had a private meeting with Prime Minister Stephen Harper at his office on Parliament Hill prior to the first reading of Private Members Bill M-235 which was passed by an overwhelming majority in the House of Commons on Feb. 14, 2007. She and other members of CABTO have continued to be the watchdogs for the implementation of the Bill which has been slowly working its way through the political system over the past six years but has gained significant momentum in recent months. Despite losing her son to the disease in October, 2012, Jennifer has continued her work to improve data collection in Canada. She and other members of CABTO continue to work closely with representatives of the Public Health Agency of Canada, the Canadian Council of Cancer Registries, Brain Tumour Foundation of Canada, Neurological Health Charities of Canada and other key players in the brain tumour community to improve the tracking of all types of brain tumours in order to achieve a better understanding of the incidence and prevalence of brain tumours in Canada. Now in her 15th consecutive year as chairperson of b.r.a.i.n.child; Jennifer also remains committed to helping the families of children with brain tumours. 49


Hallstein Gravrak (Norway)

Alex Johansson (Sweden)

Hjernesvulstforeningen (Norwegian Brain Tumour Association) Board Member .............................................................

Chair - Svenska Hjarntumorforeningen (Swedish Brain Tumour Association)

Hallstein Gravrak is 65 years old and married with two children and six grandchildren. He holds an economist degree from a university in Norway and an MBA degree from INSEAD, France. He has worked within the medical equipment industry (Laerdal Medical,Stavanger) and for more than 20 years as a Vice President with Norsk Hydro. Hallstein had a brain cancer (grade II) diagnosed in 2002. He has since the diagnosis more or less continuously been on cytotoxic treatment, but is still active both physically and mentally. He has for several years been on the Board of the Norwegian Brain Tumour Association (Hjernesvulstforeningen), and is presently acting as a consultant for them.

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............................................................. Alex is a student from Gothenburg, the second largest city in Sweden. He is currently working on his thesis for a Master of Science degree in Biotechnology. He was diagnosed with a malignant germinoma in 2006 and underwent treatment for half a year. The period following the end of treatments with its lack of rehabilitation and psychological support resulted in contact with the Swedish Brain Tumor Association. In 2010 he was selected as a board member and in 2012 he became chairman. As both chairman of the organization and a frequent organizer of local support meetings, he is regularly invited to events and work groups regarding both cancer in general and brain tumors in particular. Alex also has had numerous commitments on different levels within the local student union. The insight and experience from different organizations has led to an interest in organizational structure and efficiency as well as in the motivation for people who work pro bono.


Marty Kaye (United States)

Wendy Kaye (United States)

Students Supporting Brain Tumor Research (SSBTR)

President, Students Supporting Brain Tumor Research (SSBTR) .............................................................

............................................................ Marty grew up in New Jersey and received his M.D. degree from New York Medical College. There he met his wife, Wendy, and they are both now pediatricians. He completed his residency through the Phoenix Hospitals Affiliated Pediatrics Program and is board certified in pediatrics and is in private practice in Arizona. He is past president of the Phoenix Pediatric Society and served as Chairman of the Medical Education Committee at Phoenix Children’s Hospital for 15 years. There, he also received a special award of recognition for teaching pediatric residents in their Continuity Clinics. Currently, he is a Wellness Mentor for medical students at the University of Arizona College of Medicine – Phoenix Campus. He has been recognized as a “Top Doc” by Phoenix Magazine, as one of the “Best Doctors in America”, and has received the “Patient’s Choice Award” as one of Arizona’s favorite physicians. In 2001, at the age of 16, his daughter Lauren was diagnosed with a chordoma of the brainstem. She began a battle with cancer that would last 17 months, a struggle she would ultimately lose. Since Lauren’s passing, Marty and his wife have been intimately involved with trying to help other young people afflicted with brain tumors. Toward this end, Marty has actively served on the executive board of Students Supporting Brain Tumor Research, which allows him to work closely with high school and college students from across the state. Founded in 2002, SSBTR is the largest student non-profit organization in Arizona, whose purpose it is to develop leadership skills among our youth, promote awareness, and provide support to affected individuals and their families. Notably, this philanthropic group has just passed the $2 million milestone in total funds raised. Moneys are donated directly to cutting edge research institutions both locally and nationally. In addition, every summer over the past ten years, Marty and his wife Wendy have travelled to Ecuador and Nicaragua on medical missions, serving children who otherwise have no access to pediatric care. Marty and Wendy have also been active volunteers for Hospice of the Valley of Arizona and the Crisis Nursery.

Wendy is a pediatrician practicing in Scottsdale, Arizona. She has been the president of the unique non-profit, Students Supporting Brain Tumor Research SSBTR) for the past nine years. Wendy grew up in Westchester County, New York. She received her medical degree from New York Medical College, where she met her husband, Martin, also a pediatrician. Wendy completed her Pediatric Residency through the Phoenix Hospitals Affiliated Pediatric Program where she served as chief resident her final year. She is board certified in Pediatrics. Dr. Kaye has been recognized as a “Top Doc” by Phoenix Magazine, and as one of the “Best Doctors in America.” In her free time, Dr. Kaye enjoys spending time with her family. They share her love of volunteering. Wendy and Marty lost their 17 year old daughter Lauren to a brain tumor. During her illness, Lauren asked her parents to help find a cure for others battling this disease. Students Supporting Brain Tumor Research (SSBTR), allows her to work hand in hand with students of all ages. SSBTR has multiple goals including: funding brain tumor research, spreading awareness, promoting student leadership and supporting those fighting their tumors. In keeping with her priority of service to others, Wendy and her family have travelled on medical missions providing care to infants and children in Central and South America. Dr. Kaye has also been an active volunteer for Hospice of the Valley and the Crisis Nursery. She has also served on committees at Good Samaritan Hospital and Phoenix Children’s Hospital. Wendy also volunteers in training future physicians from Phoenix Children’s Hospital, Mid-Western University and University of Arizona School of Medicine.

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Kris Knight (United States)

Uday Krishna (India)

Chief Marketing and Community Relations Officer for the National Brain Tumor Society (NBTS)

Brain Tumour Foundation of India (BTFI) .............................................................

............................................................. Kristina Knight is the Chief Marketing and Community Relations Officer for the National Brain Tumor Society. Kris is responsible for how the organization communicates and for the experience the community has interfacing with them. Kris joined the Brain Tumor Society in 2007. In 2008, the National Brain Tumor Society was created as a result of the merger of the Brain Tumor Society of Massachusetts and the National Brain Tumor Foundation of California. Along with communications leadership, Kris led the rebranding efforts that launched the organization whose impact has been felt nationally and internationally through the re-design and focused integration of its research and public policy & advocacy programs. Prior to working in the brain tumor community, Kris spent many years in branding and business development for small to mid size businesses, working with non-profit, higher education, biotech, and technology clients, or working in-house to run marketing programs. She also specialized in client services management. Kris earned a BA in Graphic Design from Rochester Institute of Technology. She applies her creative talents in both her work and her personal endeavors, such as photography and glassblowing.

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Uday is a 31 year old, physician from Barigalore, South India. He holds a post graduate degree in Oncology from Christian Medical College in Vellore in South of India, one of the premier institutions of the country known for education, patient care and hospitality. He is currently pursuing a fellowship program in NeuroOncology at the Tata Memorial Hospital, Mumbai, India, with part of the funding from the Brain Tumour Foundation of India (BTFI). A lecture by Prof Rakesh Jalali in August 2008, about various social aspects affecting people with brain tumours and their families, lack of awareness, heterogeneity of care in India, issues pertaining to quality of life of these patients and the evolving role of BTFI as a suitable platform to address some of these issues ignited interest in him towards this field. As a representative of BTFI, he is involved in providing comprehensive clinical care as well as being dedicated towards various aspects of rehabilitation of these people. In India, due to various factors like illiteracy, low socio-economic status, social inhibitions about cancer, lack of awareness in primary health care providers, inadequate knowledge about brain tumours in general practitioners and also, to an extent, due to fallacies of governmental legislation, the majority of people with brain tumours and especially children are not managed uniformly. This leaves an enormous psychological impact on the minds of these children as well as their parents. Most of the paediatric brain tumours are potentially curable and mandate efforts at maximum rehabilitation of these children to overcome and lead meaningful lives. Uday has been a part of this process through BFTI. He is determined to carry this forward to the next stage and create awareness in the public as well as the medical fraternity to the best of his capabilities. There is a relative dearth of brain tumour patient advocacy groups in India and in countries like his. There is also a lack of patient support groups in various parts of India. Uday believes that the World Summit is an excellent platform to learn, and understand and it is a great opportunity to interact with various groups from other parts of the world. He wishes to utilise this opportunity to the maximum possible extent. When he returns to his country, he will try to do this in the southern part of the country as a representative of BTFI. Uday thanks BTFI and the organisers of The World Summit for providing him with an invitation to participate in this program.


Carol Kruchko (United States)

Sharon Lamb (United States)

IBTA Advisor, and Founder and President – Central Brain Tumour Registry of the United States (CBTRUS)

IBTA Advisor and Neuroscience Nurse (Ret’d) ............................................................

............................................................ Carol Kruchko is the founder and current President and Administrator of the Central Brain Tumor Registry of the United States, or CBTRUS, where she has been working to improve the collection and reporting of primary brain tumors through building consensus between the cancer registry community and the brain tumor research and clinical community since 1989. Carol has served on many scientific committees and is a member of several national and international organizations with a focus on brain tumors. She provided valuable historical and statistical information which contributed to the passage of Public Law 107-260 which mandates the collection of non malignant brain tumor data by state cancer registries in the United States receiving funding from the Centers for Disease Control and Prevention National Program of Cancer Registries. Currently, Carol is a member of the North American Association of Central Cancer Registries Committee on Data Assessment and the National Cancer Institute’s Surveillance, Epidemiology and End Results Committee for Multiple Primaries Rules for Non-Malignant and Malignant Central Nervous System Tumors. Carol also serves on the Advisory Board of the Brain Tumor Epidemiology Consortium, BTEC, an international organization of researchers interested in furthering collaborations in population science. Carol received the Golden Wings Award from the Midwest Children’s Brain Tumor Center in 1999 and the NCI, SEER Leadership Award in 2003 for the many manuscripts she has co-authored on brain tumor registration and classification.

Sharon trained as a psychiatric nurse at Kingston Psychiatric Hospital Nursing School in Kingston, Ontario, Canada. She then moved to Montreal, Quebec, worked at the Montreal General Hospital , and later moved to the Montreal Neurological Institute for a six month neuro-nursing post-graduate course. After graduation Sharon moved to New York City and helped two other nurses open a cardiac intensive suite for both adult medical patients and pediatric surgical patients. The following year, she moved with a nurse friend to San Francisco, where she remained and married. Sharon did private duty nursing for a year until she knew where she wanted to work full-time. Her long term neuroscience career started at UCSF Medical Center in the neuro-radiology department. After eight years of doing the nursing for all the neurological studies, Sharon transferred to neurosurgery working for two surgeons who did chronic pain management. She was the stereotaxic nurse for 20 years assisting them in the operating room as patients were awake during their surgeries. Dr. Mitchel Berger (NS) became the Chairman of Neurological Surgery, and asked her to be his nurse, functioning in a Clinical Nurse Specialist (CNS) role for his practice. Her OR work stopped then. A year or so later, Sharon transferred to the Department of Nursing as the CNS for neurosurgery, neurology and orthopedics. Finally, her last position at UCSF was the Nurse Manager for the Multiple Sclerosis Center. They had eleven neurologists, two front office people and an authorization staff for 70-80 new referrals monthly. Sharon resigned after four years and does occasional work for them in retirement. As the stereotaxic head nurse, Sharon became involved with the brain tumor community, as Dr. Philip Gutin was implanting radioactive seeds for recurrence of GBM patients. At that time, there were no support programs for them and their families, so she began a brain tumor support group in San Francisco and a few years later, one in Palo Alto at Stanford. Those continue to this day, thanks to wonderful nurses who help her with co-facilitation. Sharon was one of the original Board Members of Friends of Brain Tumor Research, a support agency of UCSF to help Dr. Charles Wilson raise research dollars for the Brain Tumor Research Center he had established. That became National Brain Tumor Foundation, and eventually that organization merged with Brain Tumor Society of Boston to be renamed, National Brain Tumor Society. Sharon 53


resigned from the board three years ago. Currently, Sharon remains active in the brain tumor community through her two support groups and referrals from all over the country, or world for patients / families going through this disease.

Lia Le Roy (Belgium) President - Belgian Study Group Brain Tumours (Werkgroep Hersentumoren vzw) .............................................................

Marianne Lee (Canada) Chair, Advocacy Committee Brain Tumour Foundation of Canada ............................................................. Marianne has been a medical social worker since graduating from the University of Toronto with a Masters of Social Work in 1985. She worked in Toronto and St. John’s Newfoundland before settling in London, Ontario. She worked at the London Regional Cancer Centre with the Neurooncology Programme before moving to University Hospital (now a part of London Health Sciences Centre) where she has worked in the Clinical Neurosciences Programme for the last 25 years. The majority of patients and families she works with are those with newly diagnosed brain tumours. Over seven years ago Marianne was asked to join the Board of the Brain Tumour Foundation of Canada representing frontline healthcare workers. In this position Marianne has been able to help the Foundation move forward in their mission to serve the brain tumour community by sitting on the board and several committees including the Programmes and Services Committee, Research Committee and for the last two years as Chair of the newly formed Advocacy Committee where the goal is to ensure that all Canadians affected by a brain tumour have equal access to all recognized treatments and services. In her spare time Marianne enjoys attending concerts and sporting events and hopefully by the time this Summit occurs will have run her 8th marathon, the ING New York City Marathon.

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Lia Le Roy is the president of the Belgian Study Group Brain Tumours (Werkgroep Hersentumoren vzw). She and her husband, Frank Boeye, who had a glioblastoma, founded this patient support and advocacy group in 2005 together with other brain tumour patients and a scientific council. Until March 2012, she was the secretary of the organization and her husband was the president. After Frank passed away Lia became president. Since 2005, she has been working as a volunteer for the organization. Until 2012 Lia accompanied her husband when he had appointments with politicians and members of the government or their staff and when he went to workshops and symposia in Belgium, the Netherlands, Germany, on a national and European level. Lia organizes contacts between patients (collective and individual) and information sessions about brain tumours (glioblastoma, meningioma, metastatic brain tumours) and related subjects (ergotherapy). Also she works closely with other brain tumour patient organizations in Belgium. In 2009 Lia set up a five-day course “How to handle patients with a brain lesion ?” for carers of rehabilitation and occupation centers in four different regions of Flanders. This year she was invited by the Belgian Senate, commission social affairs: study group “Opportunities and challenges of innovative therapies”, to explain the brain tumour patient’s viewpoint in this matter. Since 2011 Lia has been a board member of the “Vlaams Patientenplatform”, an umbrella organization of patient groups which deals with patients rights and the patients’ voice. Study Group Brain Tumours is a member of different organizations which are involved in the cure or care of patients with neurological diseases, rare diseases and cancer in her own country and moreover in the European Union. In her professional life Lia was first working as a science and mathematics teacher in a high school and later as a member of the school’s daily organization staff. Now she has been retired and dedicates most of her time to Study Group Brain Tumours.


Melissa Lim (Singapore)

Mary Lovely (United States)

Facilitator - Singapore Brain Tumour Support Group

IBTA Advisor and American Brain Tumor Association (ABTA) Senior Advisor .............................................................

............................................................ Melissa Lim is the Facilitator and Programme Manager of the Singapore Brain Tumour Support Group (BTSG). The BTSG was established in 2003 to journey alongside brain tumour patients and their caregivers. The main activities of BTSG include talks and discussions about brain tumours, treatments, diet and patient-care related issues. In addition, the group bonds through informal activities like home gatherings, hospital visits and outings. BTSG now has about 15 regular members comprising a mix of patients, caregivers and nurses. Melissa was diagnosed with acoustic neuroma in 2003. She received surgery and treatment in 2004 and has since recovered well. This episode, however, was not her first encounter with brain tumours. She was a caregiver for her late mother who had GBM for two years from 1996 to 1998. Inspired by the wonderful care she received during her one month stay for her brain tumour surgery, Melissa joined BTSG in 2004. As an active member, Melissa was an invited speaker at several local Brain Tumour Forums. She took over the helm of BTSG in 2013 and has since established regular monthly meetings as well as forming closer ties with local hospitals providing brain tumour medical care. Melissa has her own consultancy business in executive training and development. In addition, she is a contractor with global consulting companies specialising in Leadership Development, Talent Management and Organizational Effectiveness.

Mary has been a neuroscience nurse since 1974. She starting working with general neurological/neurosurgical patients in Seattle, Washington, including University of Washington Epilepsy Center. She then earned a Masters in Nursing at University of Washington as a Clinical Nurse Specialist in Neuroscience Nursing. Mary next took a position as a research nurse in neuro trauma for the Department of Neurosurgery at San Francisco General Hospital. Neuroscience Clinical Nurse Specialist position at the San Francisco Veterans Medical Center was her next stop where she worked primarily with brain tumor patients. Mary earned her PhD in Nursing at University of California San Francisco (UCSF) focusing on symptom management and brain tumor patient care, and studied the effects of fatigue on brain tumor patients as a post doctoral fellow. Dr. Lovely has recently developed a program of research around long term effects of patients and families with brain tumors. She has numerous presentations and publications as Assistant Adjunct Professor in the UCSF School of Nursing. She is presently employed at the American Brain Tumor Association as Senior Advisor for National Programs and Patient Services. She communicates with patients and families about clinical issues throughout the United States. Dr. Lovely also designs surveys and lends her neuro oncology expertise to many of the American Brain Tumor Association’s programs. Currently, she sits on the Board of Directors of the Society for Neuro Oncology, and on the Advisory Board of the Collaborative Ependymoma Research Network. She is presently the editor for Clinical Nursing Practice Guidelines for Adult Brain Tumor Patients through the American Association of Neuroscience Nurses.

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Mary Ellen Maher (United States)

Tina Mitchell Skinner (United Kingdom)

IBTA Advisor and Advanced Practice Nurse in Neurosurgical Oncology, Northwestern Brain Tumor Institute

Founder and Chief Executive, Hammer Out Brain Tumours. .............................................................

............................................................. Mary Ellen Maher, RN, APN, CNRN is an advanced practice nurse in neurosurgical oncology at the Northwestern Brain Tumor Institute in Chicago, Illinois. Mary Ellen has been working with neurosurgical patients for over thirty years. She completed her Bachelor of Science degree at Olivet Nazarene University, then her Master of Science with a clinical specialty in medical surgical nursing at Loyola University in Chicago. Currently, Mary Ellen is coordinating the pre- and post-operative care of all of the patients for Dr. James Chandler. This follows the continuum of care from initial presentation to yearly follow-up or end of life. She has been facilitating the Northwestern Brain Tumor Support Group for over twenty-one years. The group, which consists of patients and their caregivers, meets monthly and covers a variety of topics to “Let’s Talk.” Mary Ellen has lectured locally and nationally on varied brain tumor topics. She has participated in various research studies from quality of life to vaccine trials. In addition, she has been past president of her local chapter of American Association of Neuroscience Nurses (AANN) and group facilitator for the special focus group of neuro oncology nurses for AANN. Mary Ellen has worked at the IBTA booth with Denis and Kathy at ASCO and The Society for Neuro Oncology conferences. Mary Ellen resides in Chicago with her seventeen-year-old son, Jose. She is honored to participate with this international group.

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Tina Mitchell Skinner is the Founder and Chief Executive of Bristolbased charity Hammer Out Brain Tumours; a charity that supports those whose lives have been affected by a brain tumour. Formerly a training and development manager for a leading bank in the UK, Tina adopts a very patient-focused and results-oriented approach towards leading the charity. Tina graduated in 1987 with a BA in Modern Languages with Information Systems from the University of the West of England. Following two years working for international company IATA at their Executive Offices in Geneva, Tina then took up a wide variety of marketing posts before moving into the field of management training and development within the UK financial services industry. Having taken a break to raise her son in 1997, Tina’s husband Paul, sadly died of a Grade IV glioblastoma in 2003. Tina set up the charity in his memory. Marking its tenth anniversary this year, Hammer Out has been instrumental in the many developments within the brain tumour community over the years. Being selected from clinical specialist and patient advocate nominations from the non-manufacturer/ sponsor consultees and commentators, Tina participated as a patient “expert” in the Appraisal Committee discussions and provided evidence and gave her expert personal view on carmustine implants and temozolomide for the treatment of newly diagnosed high-grade glioma. This resulted in her being a significant part of the Appraisal Committee’s deliberations and turning around NICE’s originally negative decision. Tina has also sat on many different patient groups specialising in brain tumours and Hammer Out is part of the group representing the patient and public “voice” on the Clinical Reference Group which covers specialised services relating to CNS tumours. Hammer Out raises money through corporate and individual giving in order to raise the profile of the devastating effect of brain tumours; to fund essential research into the causes and potential treatments; and, most importantly, to give support to those whose lives are affected. The charity employs a small team of staff and volunteers and has grown to become one of the leading providers in patient support, pioneering work in holistic family and patient support through its wide network of patient and carer groups, conferences, dedicated counsellors and family support workers. Watching her husband Paul face his brain tumour journey with


such humility, incredible faith, courage and strength, Tina’s personal experience as his carer and the loss of such a wonderful person has given her the determination to ensure that Hammer Out will continue to make a difference in the lives of all the families involved in the charity who have a similar journey.

Yuko Moue (Japan) Vice Representative, Pediatric Brain Tumor Network of Japan (PBTN) .............................................................

Nitesh Mohanty (India) Brain Tumour Foundation of India (BTFI) ............................................................ “The wound is the place where the Light enters you.” ~ (Rumi). My wife Diya is a brain tumor survivor. Six years ago she was diagnosed with an astrocytoma in the right parietal lobe. She’s gone through six months of radiation, had a relapse in 2010, got re-operated and is just coming out of year-long chemotherapy. We continue to live from one MRI to another. Living each day as it comes. Diya says, ‘The tumour has been my best friend.’ It has taught her to relook at life, be more empathetic about other human beings, count her blessings, not take life for granted and live life to the fullest. Times such as these,become a lens through which you re-imagine and relive the gift of Life, holding it carefully within your palm then letting it scatter away. The tumour has brought both of us closer than ever before. It taught me to value Diya more as my friend, my partner, my lover, my soul mate. It provoked us to start working on our dreams and not push them away into the future. For me, I had decided to do nothing else, but just “stand by her”, stand by her through all moments weak and strong; stand by her through days of uncertainty and nights of endless wonder, see her through the dwindling faith and learning to be hopeful, not just showing her that I’m strong, but really being so. The tumor also got us together into a big family of “The Brain Tumor Foundation”, which gave us an opportunity to extend our creativity to support the annual art event, organized by Dr. Rakesh Jalali. During the last few years, we’ve done a series of engagements in pursuit of bringing a smile to the faces of the survivors. We draw a lot of inspiration from the little ones, whom we meet in the corridors of Tata Memorial Hospital. Every time we visit the hospital, we use our time to talk to newly diagnosed patients and their anxious family members - who are mostly filled with distress and uncertainty - as a friendly stranger. Diya starts sharing her story and her journey, extending a bit of light within their vulnerable, clouded, fearful minds. Diya, means ‘Light’.

My daughter was diagnosed with a medulloblastoma brain tumour and treated by operation, partial radiation and allogeneic stem cell transplantation in1998 when she was one year and five months. She is now 16 years old and still has some treatments for complications and late effects such as endocrine disorder, fertility problems, and teeth bud hypoplasia. I participate in the Pediatric Brain Tumor Network of Japan which is a self-support family group to improve the quality of life themselves. I have been Vice President of PBTN since 2005. As each pediatric brain tumor is a very rare disease, patients and their families cannot easily come face to face to exchange information about the diseases and their problems. PBTN has organized an internet website community for patients’ families for almost nine years. Many website communities such as those for craniopharyngioma, germ cell tumor, brainstem tumours, ependymoma tumours, and regional groups were born from the PBTN website. I also have helped the network of 29 pediatric cancer patients families’ groups since 2008 by using mailing lists. On behalf of them, I sought the improvement of the medical care system for pediatric cancers when I was a member of the National Council for Promoting Anti-Cancer Measures initiated by the Ministry of Health, Labor and Welfare of Japan during 2011. As a result, the Japanese government has begun to emphasize action within the pediatric cancer medical system, especially for intractable types of cancer, including pediatric brain tumors, since last year. I am looking forward to meeting all of you at the First World Summit of Brain Tumour Patient Advocates.

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Zambia and South Africa to seek collaboration and an understanding of their brain tumour patient situation. She has also been invited and attended four BT UK annual brain tumour conferences. She looks forward to the First World Summit of Brain Tumour Patient Advocates with such enthusiasm.

Christine Mungoshi (Zimbabwe) Director, Zimbabwe Brain Tumour Association (ZBTA) ............................................................. Christine Mungoshi is the Director of the Zimbabwe Brain Tumor Association (ZBTA). She helped found the ZBTA after her daughter Paidamoyo was diagnosed with a brain tumor. The challenges that confronted her were daunting, every effort to seek treatment was a daunting experience; there was virtually no information on brain tumours, no equipment available in the country to treat her daughter’s tumour. With only three neurosurgeons serving fourteen million people at the time the situation was dire. Currently Christine prides herself with the achievements posted by the ZBTA to date despite the economic challenges facing the country; which has grossly affected the organisation’s resource mobilisation efforts. However, despite these difficulties achievements have been realised through awareness campaigns and helping the brain tumour communities in Zimbabwe get access to brain tumour resource material. Most of the material was donated by brain tumour organisations around the world. The ZBTA has distributed more than four thousand food hampers to patients at home and in hospitals, helped pay for diagnostic treatment for mostly paediatric brain tumour patients. The ZBTA’s discussions with the Ministry of Health saw the resumption of training of neurosurgeons, and currently there are two young qualified neurosurgeons now practicing. Christine is a brain tumour patient advocate, operating in a resource strained part of the world; she understands the challenges that confront her; where the balance between the costs of treatment can be a determinant to choice to life enhancing treatments for patients. Despite this challenge, she believes in the guiding principle; ‘Every human life matters’. Christine is a strong advocate of the vision to create a working model for neuro oncology in Africa, to keep on tapping into the already existing advances made and find the balance between efficiency and cost effectiveness. She has vast experience in finance where she worked for thirteen years in the energy sector and held middle management positions. She holds various qualifications in accounting, a Diploma in Supervisory Management, Diploma in Social Sciences from Sofia (Bulgaria). She is in her final year of a BA Social Work program at the De Montfort University in the United Kingdom, her area of interest is palliative care in her quest to get more understanding of brain tumour patient situations. Christine has extensively travelled in Zimbabwe, to neighbouring

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Luke Mungoshi (Zimbabwe) Volunteer- Zimbabwe Brain Tumour Association (ZBTA) ............................................................. Luke Mungoshi is a committed volunteer with the Zimbabwe Brain Tumour Association (ZBTA) , offering a lot of support first to the efforts to establish the ZBTA as a functional model; and then in working with the brain tumour community in Zimbabwe. Though his work experience is not congruent with the volunteering role that he is doing now, he has sought to gain the required skills through his interest and experiences in helping. Luke is a retired Aircraft Armament Technician; he retired from the Air Force of Zimbabwe where he served for twenty years. He has vast experience in fighter aircraft maintenance and training; which saw him seek further training and thus served as a technical instructor for the ten years preceding his retirement from the Force. Luke is a qualified aircraft technician, he holds various certificates in structural techniques, aircraft safety precautions and a noncommissioned officers’ senior management’s course. Luke is looking forward to the experiences of the first ever World Summit on Brain Tumour Patient Advocacy as it will broaden his knowledge on the work being done around the world.


Al Musella (United States) Musella Foundation for Brain Tumor Research and Information ............................................................ Al Musella, DPM, is a podiatrist in private practice in Hewlett, New York. His interest in brain tumors started when his sister-in-law, Lana, was diagnosed with a GBM in 1992, and was told it was hopeless. At that time, the web was just being born - the first web browser was released in 1993! There were no online resources for brain tumor patients, so Al created the first online support group dedicated to brain tumors - on Compuserve’s cancer forum. He created the first online database of brain tumor trials - which became the “Clinical Trials and Noteworthy Treatments For Brain Tumors” website - at virtualtrials.com. He invented the “brain tumor virtual trial” which is a registry of brain tumor patients, the treatments they do and the outcome. In 1997, Al started the Musella Foundation For Brain Tumor Research and Information, Inc. A 501(c)(3) nonprofit public charity dedicated to speeding up the search for the cure of brain tumors and to help families deal with a brain tumor diagnosis. Al functions as the president of the organization. The Musella Foundation creates and distributes educational materials, provides help matching patients to clinical trials, gives emotional and financial support to brain tumor patients, raises awareness, provides advocacy for brain tumor issues and gives grants for brain tumor research. In 2008, Al co-founded the “Grey Ribbon Crusade” and the “National Walk To End Brain Tumors”. This was an attempt to get the brain tumor foundations working together as an army to speed up the search for the cure. Today, there are over 100 brain tumor charities as members. For details, go to greyribboncrusade.org In 2011, Al started the Brain Tumor Copayment Assistance program, which provides patients with primary malignant brain tumors $5,000 per year to help with copayments. He has given out over $1 million to brain tumor patients so far. In 2011, Al was named as the patient advocate on the Executive Committee for the UCLA Brain Tumor Spore Program. As a patient advocate, Al has served on the committee that wrote the package insert for Temodar; started letter writing campaigns to help get Temodar approved and paid for by Medicare; testified to Medicare to help get Medicare to pay for Gliadel; testified at the FDA meetings to help get Avastin and the Novocure System approved. Ironically, Al’s father was diagnosed with a GBM in 1999, two years after Al formed the Musella Foundation. He died quickly, in about three months. His sister-in-law survived almost eight years and died in 2000.

Gordon Oliver (United Kingdom)

............................................................. Gordon is married to Kathy Oliver, Co-Director of the IBTA. Their son, Colin, was diagnosed with a brain tumour in 2004 and tragically passed away in August 2011, age 32. The Olivers have a daughter, Miranda, who is a primary school teacher and is married to Keith Baxter-Russell. Gordon has been a partner in the Central London law firm of Hamlins LLP since 1982 and in that capacity provides legal advice to the International Brain Tumour Alliance. Born and brought up in Wales, UK, Gordon was educated in England and graduated from King’s London. Throughout his career he has specialised in commercial and company law, and latterly in anti-corruption systems and procedures for internationally-based groups of companies. Family life is very important to him but he can occasionally be found working on an old car. Best thinking time.

Kathy Oliver (United Kingdom) Co-Founder, Co-Director and Chair of the International Brain Tumour Alliance (IBTA) ............................................................. Kathy Oliver is a founding Co-Director of the International Brain Tumour Alliance (IBTA). Kathy’s son, Colin, was diagnosed with a brain tumour in 2004 at age 24 and passed away, at age 32, in August 2011. She cites her son’s “incredible courage, determination and fortitude” as the driving force and inspiration behind her involvement in the international brain tumour and cancer community. The IBTA project-manages the annual “International Brain Tumour Awareness Week” and the “Walk Around the World for Brain Tumours” (see www.theibta.org) which have been supported by up 59


to 197 brain tumour-relevant organisations around the globe. Working with IBTA Chair and Co-Director, Denis Strangman (Canberra, Australia), Kathy is involved in advocating for equitable access to new brain tumour therapies; encouraging the establishment of brain tumour patient and caregiver support groups in countries where they don’t yet exist; and raising awareness of the challenges this devastating disease presents. Kathy is also involved in a range of high-level projects and committees addressing brain tumour and rare cancer issues in Europe. She is a frequent plenary and session speaker at international neuro-oncology and cancer conferences. She serves on the Editorial Board as the Patient Issues Editor for the online magazine of the European Association of Neuro-Oncology (EANO) and is on the campaign organisation committee for Rare Cancers Europe (previously known as the “European Action Against Rare Cancers - EAARC” initiative). She is Vice-Chair of the European CanCer Organisation Patient Advisory Committee (ECCO PAC). Kathy is a member of various international advisory boards for the healthcare industry. In September 2011 Kathy was named as the first recipient of the newly-established “European Society of Neuro Oncology (EANO) Award” presented at the European Cancer Congress in Stockholm. Kathy also participated in the British Neuro Oncology Society’s National Guidelines Group for Rare Brain and CNS Tumours and on the Rare Disease UK Working Group on Patient Care and Information. She is a Director and Strategy Group member of Cancer52, a UK umbrella organisation for over 60 rare cancer charities. Kathy has recently been appointed to the UK National Cancer Research Institute’s (NCRI) Brain Tumour Clinical Studies Group’s subgroup on palliative care and quality of life. Kathy is an ex-freelance journalist and, together with IBTA Chair Denis Strangman, she co-edits the IBTA’s major annual magazine, Brain Tumour, of which approximately 12,000 copies are printed each year and distributed for free to recipients in 109 countries. Kathy is also Co-Chair of the Project Advisory Board for the European Patients’ Academy on Therapeutic Innovation (EUPATI). This patient-led initiative is developing educational material, training courses and a public Internet library to educate patient representatives and the lay public about processes involved in medicines development.

Sally Payne (Australia) IBTA Advisor ............................................................. Sally Payne has been assisting the International Brain Tumour Alliance (IBTA) since 2006. The IBTA has a database of more than 10,000 contacts in the brain tumour world. Sally helped set up and maintain the database. In addition, Sally assists the Co-Directors where required and has represented the IBTA at a number of conferences. Sally is a program manager in an academic institution coordinating teaching staff in IT diplomas. She is very interested in research and new therapies for this devastating disease and works to raise awareness of the challenges this disease presents. Sally’s sister, Arianne, was diagnosed with a brain tumour in 2005 at age 38 and passed away, at age 43, in September 2011. Sally assisted in caring for Arianne and is very aware of the challenges this presents.

Matt Pitt (Australia) Chair, Brain Tumour Alliance Australia ............................................................. Matt Pitt is a co-founder, inaugural and still current Chair of Brain Tumour Alliance Australia (BTAA; see www.btaa.org.au), presently the only Australian national peer-led support and advocacy organisation for brain tumour patients and caregivers. BTAA has been incorporated (registered) in Australia since 2009, and along with providing a Freecall 1800 number service, distributes free of charge the American Brain Tumor Association’s ‘About Brain Tumors’ booklet, organises and hosts free patient and caregiver information forums in collaboration with neurooncologists and other authoritative medical professionals, and provides

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newsletters and email updates on available health services, amongst other activities. Matt is also a Senior Regulatory Toxicologist with over six years’ experience in regulatory toxicology at the Department of Health and Ageing, Australian Public Service. Matt has a Masters of Public Health and a Bachelor of Biotechnology (Hons.), both from the Australian National University, and worked as a Research Assistant in a pancreatic cancer laboratory at the University of New South Wales. Matt lists his key achievements as: contributing to BTAA’s co-authoring of the factsheet ‘Brain tumours, depression and anxiety disorders (fact sheet 46)’, in collaboration with the nongovernment Australian organisation, Beyondblue; Assisting BTAA in its co-hosting/hosting of three national patient conferences/ information days for brain tumour patients and caregivers at: 1) The Sydney Kolling Institute, 2012, with Professor Martin van den Bent 2) The Queensland Cancer Council Brisbane, 2012, with Professor Susan Chang, and 3) The Melbourne Austin Hospital, 2013, with Dr Warren Mason, amongst other authoritative speakers; contributing to the 2005 Australian Senate Committee Inquiry into services and treatment options for persons with cancer, and the 2011 Inquiry into the Government’s administration of the Pharmaceutical Benefits Scheme; being a co-investigator in the 2012 grant application to continue and expand upon the Australian Genomics and Clinical Outcomes of Glioma (AGOG) project; and, being personally invited by CEO Professor Ian Olver to represent consumers on the Cancer Council Australia’s soon-to-be convened Expert Consumer Committee. On 27 October this year, BTAA convened a conference of peer-led Australian support and advocacy groups for patients and carers, and will provide contemporary, Australian-wide consensus views arising from the conference to delegates at the IBTA World Summit of Brain Tumour Patient Advocates, 18 to 20 November, to assist forming a unified view on advocacy and support needs on a global scale.

The firm is called Abanlex. In October 2008 he was diagnosed with a brain tumor, and it was necessary to have a rapid surgical intervention due to the type and rapidly growing brain tumor. After surgery began sessions of chemotherapy and radiotherapy for nine months. At the end of the treatment, which was very successful, Oscar decided to leave the legal profession to found the first and unique Spanish national association of patients with brain tumors, ASATE and use his time and expertise to help newlydiagnosed patients. In Spain, 3,500 new cases of primary brain tumours are diagnosed annually and 14,000 cases of brain metastasis are diagnosed. Some of the activities and services offered by the association are: psychological care for patients and their families; rehabilitation specializing in brain injury; physical therapy; legal assistance; speech therapy; reports on hospitals and medical specialists in brain tumors; and treatment and equipment information most appropriate for the treatment of brain tumors. ASATE is a founding member of Group Spanish Cancer Patients GEPAC, which currently has as its members 47 patient associations from different cancer pathologies. GEPAC is the most important and influential organization of patients in Spain. Oscar is secretary of the board and vice president until the new general assembly

Karen Risgaard (Denmark) Secretary, HjernetumorForeningen (Danish Brain Tumor Association) ............................................................

Oscar Prieto Martinez (Spain) President , ASATE (Association of Patients with Brain Tumors in Spain) ............................................................ Oscar has developed his career over eight years in various law firms. In February 2008 he founded his own firm with two attorneys.

Karen graduated as a physiotherapist in 1978. She has been working with neurological diseases most of her professional career, first as a physiotherapist at hospitals, second as lecturer in physiotherapy for many years. In 2008 she became Principal for a center for rehabilitation for brain damaged people, which Karen graduated as a physiotherapist in 1978. She has been working with neurological diseases most of her professional career, first as a physiotherapist at hospitals, second as lecturer in physiotherapy for many years. In 2008 she became Principal for a center for rehabilitation for brain damaged people, which unfortunately was disbanded in 2011. Now she works in an acute stroke department. Karen has a daughter age 19 years. Karen’s husband was diagnosed with a GBM in March 2010 and he died in July 2011. 61


Karen and her husband gave a presentation together at the first “Brain Tumour Day” held in Copenhagen in April 2011. They spoke about the problems and challenges you can meet in a marriage, when one person gets seriously ill and is going to die. Karen participated in creating a network for brain tumour patients in Denmark, which was established in April 2011. In April 2012 the network was changed into a brain tumour association, and Karen works as a secretary for the “HjernetumorForeningen”, as the association is called in Danish. Karen is also a contact person for patients with brain tumours and their relatives in the northern part of Denmark, and she is supervisor for a group of relatives, who meet once a month. She has given several presentations at meetings and conferences, all concerned about the challenges for the patient and their relatives, when you are diagnosed with a brain tumour and especially if there are cognitive deficits.

years in market research consulting firms in the drug development industry across a broad spectrum of disease areas. Joanne is also trained as a lay person to provide one-on-one care and support to people in need. She volunteers as the referral coordinator for a nationwide faith-based program that serves the emotional and spiritual needs of people in her local community facing personal hardships. Originally from Montreal, Canada, Joanne received her Ph.D. in biochemistry from Oregon Health and Sciences University. She obtained her B.S. in biology from Stanford University, where she also conducted post-doctoral research in molecular pharmacology.

Yutaka Sawamura (Japan) Neurosurgeon and interpreter for Japanese participants at the IBTA Summit

Joanne Salcido (United States) VP Research and Family Support, Pediatric Brain Tumor Foundation (PBTF) ............................................................. Joanne Salcido applies an exceptional multidisciplinary background and the necessary analytical, relational and leadership skills to her role as the PBTF’s chief mission officer. She helps translate the promise of research into medical breakthroughs for children with brain tumors and guides the PBTF’s supportive resources for these patients and their families. Before joining the PBTF in March 2013, Joanne had extensive experience successfully developing and directing innovative funding programs at nonprofit foundations advancing cutting-edge research in the brain cancer field, including The Ben & Catherine Ivy Foundation and Accelerate Brain Cancer Cure. She has conducted laboratory research in academia and at startup companies, and worked as a senior analyst for more than ten

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............................................................. Dr Sawamura was born in Aichi, Japan, and is a neurosurgeon who will be attending the Summit primarily to assist the Japanese participants from the Japanese adult and paediatric brain tumour associations in their understanding of the proceedings. He will also be able to contribute towards the discussions because of his unique knowledge of Japanese and world brain tumour clinical practices and his proficiency in the English language. He is a former President of the Japan Neurosurgical Society and is currently a member of the editorial board of the journal NeuroOncology, which is published by the US-based Society for NeuroOncology (SNO). He was present at the establishment of the IBTA in Edinburgh in 2005 and renewed acquaintances with the IBTA Chair at the World Federation of Neuro Oncology (WFNO) Conference held in Yokohama, Japan, in 2009. This year’s meeting of WFNO is being held concurrently with the SNO annual scientific meeting which follows the brain tumour patient advocates’ Summit being held near San Francisco. Dr Sawamura, who holds qualifications as a Medical Doctor and a Doctor of Medical Science, undertook his early studies at Hokkaido University School of Medicine and also at the Centre Hospitalier Universitaire Vaudois, in Lausanne, Switzerland, during 1991-92, and was Senior Assistant Professor (Lecturer) and Head of the Brain Tumour Group in the Department of Neurosurgery at Hokkaido University Graduate School of Medicine during 1992-2010. He now heads the Sawamura Neurosurgical Clinic. Dr Sawamura has received awards from the Japan Neurosurgical


Society and the American Association of Neurological Surgeons and the Congress of Neurological Surgeons. In Japan neurosurgeons are very much involved in the supervision of a patient’s neuro-oncology therapies. Dr Sawamura has also worked closely with the Japanese brain tumour patient and caregiver support groups.

Geri-Dee Shaffer (United States) Executive Director, Southeastern Brain Tumor Foundation (SBTF) ............................................................

Francesca Kozmann Scropetta (Italy) Il Fondo di Gio and Brainlife ............................................................ Francesca Kozmann Scropetta is Giovanni Scropetta’s mother; she is the President of Gio’s Fund for Research on Brain Tumors (GIO’s Fund). The Gio’s Fund Logo (see www.ilfondodigio.it) is the Rainbow that Giovanni drew a few days before going to heaven, in 2002, due to a brain tumor against which he fought with great courage and pride for a quarter of his life. Elisabetta Mancini Camporeale (born 20 May 1954, GBM diagnosis 13 Dec 1999, died 2 Mar 2012), Honorary President of Gio’s Fund and Co-founder and Editor of Brainlife (see www.brainlife.org), dedicated to little Giovanni and to his bravery one of her beautiful Nursery Tales (entitled Jo’s Dream). Working with her husband Lucio, Francesca is involved in raising funds to support scientific research in the field of childhood brain tumors (research conducted in Italy by: The Foundation of the “Carlo Besta” Neurological Institute, IRCCS, Milan; Sapienza University of Rome; Department of Pediatrics, IRCCS Foundation, National Cancer Institute, Milan; Department of Onco-Hematology and Department of Neuroscience, “Meyer” Children’s Hospital, Florence) and in raising awareness of the challenges that pediatric patients have to face (Scientific Research Institute and Hospital for Pediatrics “Burlo Garofolo”, Trieste). Francesca is a lawyer, she has two daughters aged 15 and 9 years

Geri-Dee Shaffer is the Executive Director of the Southeastern Brain Tumor Foundation (SBTF) which is based in Atlanta, Georgia, USA. The SBTF is recognized as a 501(c)3, not for profit organization. Its mission is to improve the quality of life for brain tumor patients and their families. The SBTF raises funds for research and medical personnel so that a cure for brain tumors can be found. At the Foundation, Geri is involved in all facets of the organization some of which include research grant solicitations, community, volunteer, and donor outreach programs, as well as brain tumor awareness campaigns, social media management, and donor interface. Geri serves an all-volunteer Board of Directors each of whom has been touched by brain tumors. Each member of the SBTF Board has either been diagnosed with, works in the field of, or has/had a child, parent, husband, wife, brother, sister or close friend diagnosed with a brain tumor. It is the hope of each Board member that a cure will be found. In this non-profit arena we are surrounded by passionate, compassionate, and philanthropic individuals who band together to teach so others may learn, to treat so others may live, and to lead so others may follow. Aside from the Foundation, Geri has also been recognized as an influential member of the healthcare meetings sector. Well known by industry colleagues for her expertise, knowledge, and accomplishments associated with medical education and events, she is driven and devoted to her many passions, the most notable being her passion to serve others. Geri’s dedication to advance various facets of the healthcare industry, are validated through her 30+ years of service with a US based subsidiary of a leading healthcare company whose products and services address the core processes of surgery. Her responsibilities in the field of medical education enabled her to work closely with, and to watch leading neurosurgeons and neurosurgical scientists advance the techniques and treatments associated with brain tumor surgery. As an industry panelist and lecturer since 1993, Geri has had the opportunity to meet, and work with, some extremely talented and passionate individuals and has served as a Committee Member, Board Member and Officer of the Board for nearly a dozen trade organizations. In her current capacity at the Southeastern Brain 63


Tumor Foundation, she hopes to continue to serve on various Boards and Committees with the hope of advancing awareness of the need for brain tumor research.

Ugnius Smalskys (Lithuania) Deputy chief of Kartu Lengviau, the Lithuanian organization “Easier together” for brain tumour patients

Justina Smalskiené (Lithuania) Member of Kartu Lengviau, the organization “Easier together” for brain tumour patients ............................................................. Justina has been a diplomat in the Lithuanian Ministry of Foreign Affairs since 2008. She studied international relations, political science, law and management. Justina is married to Ugnius. In 2007 Ugnius was diagnosed with an oligoastrocytoma anaplastic brain tumour. After the successful surgery and radiation therapy Justina and Ugnius started looking for more information on the disease, its treatment and the way of living with a tumour. As there was not much information provided, they were happy to find a newly created organization, Kartu Lengviau (“Easier together”) for Lithuanian brain tumour patients and their families. Justina and her husband joined the organization in 2008 and started organizing support groups, seminars and mini – conferences for patients and their families, trying to unify a brain tumour community in Lithuania, including medical staff, for better information dissemination about the disease. Justina is also interested in psychology, philosophy, languages, history, and photography.

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............................................................. Ugnius has worked as a Scandinavian SEB Bank officer in Vilnius, the Lithuanian capital, since 1999. He also has been lecturing in business management for students as a part time lecturer. He has been married since 2008 to Justina. In 2007 Ugnius was diagnosed with oligoastrocytoma anaplastic brain tumour, had surgical removal of the tumour, then underwent radiation therapy. In 2012 a recurrence of the tumour was diagnosed, followed by surgery and chemotherapy. In 2008 Ugnius joined a newly created organization called Kartu Lengviau (“Easier together”) for Lithuanian brain tumour patients and their families. The founder of it was also a brain tumour patient Ingrida. In 2009, after Ingrida passed away, Ugnius became the cochief of the organization, together with Ingrida’s husband Liutauras. Since then, Ugnius and other organization members have been organizing support groups, seminars and mini – conferences for patients and their families, trying to unify a brain tumour community in Lithuania, including medical staff, for better information dissemination about the disease and its treatment. Since 2009 the Lithuanian Kartu Lengviau - “Easier together” community cooperates with the IBTA and organizes a brain tumour awareness event in November for Lithuanian brain tumour patients and their relatives. Ugnius had also played professional basketball in one of Lithuanian league teams, and he is interested in history and political science.


Dr. Stark-Vance has two adult children, Ted and Joy, and lives in Fort Worth with her rabbits, Samson and Delilah. Son Ted will be staying at the hotel while Dr Stark-Vance attends the Summit.

Virginia Stark-Vance (United States) Invited Summit dinner speaker and Summit participant Oncologist and co-founder Legacy Brain Foundation ............................................................ Virginia Stark-Vance, M.D., is a practicing oncologist in Dallas, Texas, specializing in the treatment of primary and metastatic brain tumors. She entered the Air Force following her first year at the University of Oklahoma, and continued to attend college and earn her pilot’s license while serving in San Antonio, Texas and in Germany. She returned to graduate from the University of Oklahoma, and then attended OU College of Medicine, where she was chosen as a Howard Hughes Medical Institute Research Scholar. As an HHMI scholar, she worked in the laboratory at the National Heart, Lung, and Blood Institute as a member of W. French Anderson’s “Gene Team,” which led to the first human gene therapy. She then completed her residency in Internal Medicine at Georgetown University Hospital in Washington, D.C., and her fellowship in Medical Oncology at the National Cancer Institute in 1993. While in her first year of fellowship, she was recalled to active duty in Operation Desert Storm, serving at the National Naval Medical Center in Bethesda. Following the conclusion of the Gulf War, she returned to the National Cancer Institute across the street. Her research at the NCI involved collaboration with the National Eye Institute to develop a highly successful treatment protocol for ocular and central nervous system lymphoma. Dr. Stark-Vance also served as a clinical investigator in the NCI’s Cancer Treatment Evaluation Program until she entered private practice in Texas in 1996. She continued to work in clinical research in cooperative group protocols and served as a member of the institutional review board. In 2005, her presentation at the World Federation of NeuroOncology introduced Avastin as a safe, effective drug in the treatment of malignant glioma. Dr. Stark-Vance is widely recognized among her colleagues for her innovative approaches to the treatment of brain tumors, and she has lectured extensively to health professional and patient organizations. Dr. Stark-Vance and her patient M.L. Dubay authored 100 Questions and Answers about Brain Tumors, which was published as an updated second edition in 2011. She and M.L. also founded the Legacy Brain Foundation in 2006, an organization committed to help brain tumor patients and their families in need of financial support.

Denis Strangman (Australia) Former Chair and Co-Director of the International Brain Tumour Alliance (IBTA) ............................................................ Denis is a retired Australian public servant who was private secretary to three different Australian Senators over a 25 year period. He lives in the national capital, Canberra, and has five adult children and two grandchildren. His wife Margaret developed a GBM in 2000 and passed away in 2001. Concerned at the lack of information and support for brain tumour patients and families in Australia he helped establish Australia’s first national brain tumour support and advocacy group and was its foundation Chair during 2003-2005. In 2005, together with Kathy Oliver (UK), they established the International Brain Tumour Alliance (IBTA) in Edinburgh, Scotland, and he has been Chair and Co-Director since that year, co-editing with Kathy Oliver the IBTA’s Brain Tumour magazine and monthly E-News. He has represented the IBTA at many national and international cancer and brain tumour-related conferences. In 2008 the Australian national support group he had originally helped establish decided to dissolve and, together with other colleagues, he helped form a new support and advocacy group called Brain Tumour Alliance Australia (BTAA) and was its foundation secretary between 2008-2012. He continues to serve on its national committee. As a brain tumour patient advocate in Australia he was invited to be a patient and caregiver representative on the management committee of the country’s first national CNS clinical trials coordinating group and on the committee that drafted the Australian clinical practice guidelines for glioma. Denis also has an interest in cancer and palliative care advocacy and has served on various advisory committees in the Australian Capital Territory, including the committee which developed a five-year palliative care plan for the Territory in which he lives, and the Reference Group supervising the establishment of a new $43 million cancer centre in his city which is nearing completion. Denis has an interest in research and writing on a wide range of subjects, particularly historical and parliamentary affairs, and was a volunteer track and field coach for twenty years, specialising in race 65


walking, for which he wrote an annotated bibliography published by the Australian Institute of Sport. He volunteers once a fortnight in the mental health ward at a local hospital as a carer support person.

Hisato Tagawa (Japan) Vice Chairman, Japan Brain Tumor Association (JBTA)

N. Paul TonThat (United States)

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Chief Executive Officer, National Brain Tumor Society (NBTS)

Hisato lost a six-year-old daughter to a brainstem glioma in February, 1998. He began to support patients with brain tumors and their families five years after his daughter’s death. He is now the vicechairman of JBTA. JBTA organises brain tumor study sessions all over Japan and ties up a network to brain tumor-related medical staff with the aim of achieving a better quality of life for the brain tumor patient. JBTA is concerned about the treatments for difficult diseases such as brainstem glioma. In addition, Hisato is active in improving the pediatric care environment of Japan in NPO “Smile of kids”, by the administration of the family house near an infant special hospital in Yokohama, and the support of a child with a disability and the family through music.

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Darren Terris (Canada)

............................................................. Darren Terris may be relatively new to the brain tumour world but he has witnessed its devastation first-hand after losing his teenage step-son to the disease last October. He has been a constant source of comfort, encouragement and support to his spouse Jennifer Gouchie, both during her son’s battle against the disease and following his death. The businessman from Moncton, New Brunswick, Canada has attended numerous brain tumour-related meetings, fundraisers, social activities and other such functions over the past couple of

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years and has enthusiastically opted to attend the World Brain Tumour Summit to increase his knowledge and understanding of advocacy efforts taking place throughout the world on behalf of the global brain tumour community.

N. Paul TonThat is the Chief Executive Officer of the National Brain Tumor Society. Paul joined The Brain Tumor Society in 2007. Under his leadership, The Brain Tumor Society merged with the National Brain Tumor Foundation in 2008 to form the National Brain Tumor Society – an organization whose impact has been felt nationally and internationally through the re-design and focused integration of its research and public policy & advocacy programs. Prior to working within the brain tumor community, Paul spent many years in executive transition management, focusing his skills on finance, program development and operations, board governance, and human resources solutions. His nonprofit sector career began in mental health and housing. Paul is a former Board member of the The Reuse Center at Boston Building Resources, past President of the Board of VietAID, and past member of the Mayor’s Task Force on Elections (Boston). He earned a BA in Economic-Finance from Bentley College and a M.Div. from Gordon-Conwell Theological Seminary.


Chris Tse (New Zealand) IBTA Advisor

individuals and company employees. In March 2006, Lynda was diagnosed with glioblastoma multiforme (GBM). Having successfully come through her treatment of surgery, radiotherapy and chemotherapy, she now acts as a mentor to newly diagnosed GBM patients through the local division of the New Zealand Cancer Society. In 2010 she gave a presentation to nursing staff at Wellington Hospital as part of their Brain Tumour Education Day. Lynda has participated in various fundraising activities for brain tumour research, such as the Malaghan Institute’s Run for Research campaign. Lynda is married to IBTA advisor, Chris Tse. They have two children, Cassandra and Nathan.

............................................................ Chris is an advisor to the IBTA where he assists primarily with monitoring the latest developments in brain tumour research and new therapies. He also manages the scientific conference, patient events and clinical trials registry pages on the IBTA website, and oversees aspects of the IBTA’s social media activities. His special areas of interest include: genetic research; cancer metabolism; cancer immunotherapy; clinical trials; and access to new treatments. Chris gains inspiration from his wife, Lynda, a long term survivor of glioblastoma multiforme. When Lynda was first diagnosed in 2006, Chris was appalled at the lack of treatment options for brain tumour patients in his native New Zealand. Determined to overcome New Zealand’s small population and geographic isolation, Chris became an active participant on various online brain tumour forums, which eventually lead to his involvement with the IBTA. Chris completed a Bachelor of Engineering (Chemical and Materials) from the University of Auckland and then studied business and marketing at Massey University. He has over 28 years’ commercial experience working principally in the food and beverage industries in New Zealand and Asia.

Lynda Tse (New Zealand) Brain tumour survivor and teacher ............................................................ Lynda is a kindergarten teacher in Wellington, New Zealand. She has a special interest in teaching children with English as a second language. Besides her teaching career in New Zealand, Lynda has taught in an American pre-school in Taiwan. During her two years living in Taiwan, she also taught English to

Kay Verble (United States) Executive Director, The Sontag Foundation ............................................................. Kay’s undergraduate studies in sociology and psychology set the stage for her early work as a social worker in both private and public sectors. That experience proved to be Kay’s early training ground in advocating for individuals in her sphere of influence. Graduate studies led her to a career in the nonprofit sector. The Sontag Foundation is the second foundation Kay has led. Kay has served as the Executive Director of The Sontag Foundation www.sontagfoundation.org since 2002. Susan and Rick Sontag co-founded this organization to fund brain cancer research, because Susan is a 19-year survivor of a grade 3 anaplastic astrocytoma. Susan and her story provide Kay with the motivation and commitment to make a difference for individuals fighting this disease. Susan also inspires the hope that is critical to the success of this family foundation. As Executive Director of The Sontag Foundation, Kay is responsible for the day to day operations of the foundation; she also designs and manages all grant-making programs, facilitates a brain tumor support group and advocates for the patients in that group. Kay also closely interacts with leaders of other organizations funding brain tumor research throughout the USA and Canada through the Brain Tumor Funders’ Collaborative. Kay’s advocacy efforts for brain tumor patients include linking patients and their family with reliable information about brain tumors, helping patients connect with community resources, facilitating second opinions, and being supportive of the other needs that arise for individuals in the group. The Sontag Foundation has not participated in larger advocacy initiatives, but is 67


grateful to those individuals and organizations that do. Kay and her husband live in a beach community in northeast Florida in the USA where they raised their two sons. Although Kay does not have a family connection to brain tumors, the challenges faced by brain tumor patients certainly resonate with her.

Markus Wartenberg (Germany) IBTA Summit Facilitator and Executive Director of Das Lebenshaus e.V. (The House of Life Association)

Cancer Congress and many others. Markus is a member of various international and national advisory boards for a number of scientific/medical societies and institutions and the healthcare industry

Elizabeth Wilson (United States) President and Chief Executive Officer, American Brain Tumor Association (ABTA) .............................................................

............................................................. Markus Wartenberg is the Executive Director of Das Lebenshaus e.V. (The House of Life Association).This is a German non-profit organization supporting patients with rare solid tumours such as GIST, sarcomas and kidney cancer. He is responsible for conceiving and organizing a wide range of community activities in these rare cancers with a team of patients, employees and freelancers. Markus is a highly regarded and experienced patient advocate with in-depth knowledge of advocacy challenges in Europe, the USA and Canada and is involved in a number of high-level international cancer advocacy initiatives. His particular interests are in patient support, health technology assessment (HTA), clinical trials, personalised medicine and targeted therapies, cancer research and information provision for patients. Prior to becoming involved in cancer patient advocacy, Markus completed his studies in journalism and communication. He worked in several different German communication and public relations agencies as a consultant and creative director for national and international brands. In 1993 Markus founded his own public relations agency, which focussed on pharmaceutical, medical and healthcare communications. After ten years with his business, he felt he wanted to do different work so he left the agency in 2003 to manage the charitable patient association Das Lebenshaus e.V. and the nonprofit-company Das Wissenshaus GmbH (House of Knowledge). Markus has had extensive experience organising patient advocacy events similar to the IBTA’s First World Summit of Brain Tumour Patient Advocates and is an accomplished facilitator. Markus is also a frequent plenary and session speaker at international cancer conferences and workshops such as this year’s 8th National Cancer Institute Directors meeting in Lyon, France. He also regularly attends major cancer conferences such as the American Society of Clinical Oncology, European Society for Medical Oncology, European

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Elizabeth Wilson joined the American Brain Tumor Association (ABTA) as its Executive Director in June 2008 and was named President and CEO in September 2011. Elizabeth brings to the position a track record in transformational leadership in nonprofit management and marketing communications for large, complex, mission-driven organizations. Her experience includes successfully integrating business and strategic planning, institutional positioning, reputation management, constituent relations, and intemational marketing communications. Prior to joining the ABTA, Elizabeth held increasingly senior positions with the American Hospital Association, Alzheimer’s Association, Loyola University Chicago and National Safety Council where she led efforts to expand the awareness and influence of the organizations, their missions, and strategic priorities and initiatives. In her role as a vice president for Edelman Public Relations Worldwide, Elizabeth provided strategic communications and issues/crisis management training for national charitable groups, medical societies, trade associations and government agencies on a range of issues including health care quality, access and affordability. As ABTA ‘s chief executive, Elizabeth developed and is implementing a Strategic Growth Initiative and Mission Advancement Strategy that distinguishes the ABTA as a recognized leader in brain tumor research funding as well as in education, information and support for all brain tumor age groups and tumor types. Elizabeth holds a Master’s in Nonprofit Administration (MNA) from North Park University, Chicago; a Bachelor of Science degree from Southem Illinois University, and Graduate Certificate in Business Administration and Management from Loyola University Chicago. Elizabeth is a member of the Association Forum, American Society for Association Executives (ASAE), Association of Fundraising Professionals (AFP), American Marketing Association (AMA), and Delta Mu Delta International Honor Society in Business.


Rosemary Wormington (United Kingdom) Hammer Out Brain Tumours ............................................................. Rosemary Wormington works for Hammer Out Brain Tumours as the Patient and Family Support Worker for the Midlands area of the UK. She lives in Worcestershire with her husband and son Alistair. She has been working for Hammer Out for three years and previously worked in management and training in the NHS. Rosemary’s daughter Frances was born 16 years ago with a benign tumour that was successfully removed at Birmingham Children’s Hospital (although a shunt had to be fitted due to hydrocephalus). Frances developed normally until she was eight when she started to experience problems walking and writing and after an MRI scan it emerged that she had a grade four medulloblastoma. Frances unfortunately died after two years of treatment, in 2007. Having been through this traumatic experience and shocked by the lack of support offered locally, Rosemary decided to set up a support group for anyone affected in any way by a brain tumour in Worcestershire. She then went on to be a representative on the Worcester Cancer Network User Group and brain tumour site specific groups; parent representative on the Acorns Hospice Parent User Group and raised awareness of brain tumour and end of life care issues with Macmillan and the National Council for Palliative Care amongst others. Rosemary is passionate about improving support for anyone affected by a brain tumour diagnosis so when the opportunity came up to work for the Hammer Out Brain Tumour Charity, it was too good to miss. She now facilitates five monthly support groups (co-facilitates two others) across the Midlands region for both adults and children, as well as offering one to one support, via home visits, email and telephone. Having such regular contact with patients, families and clinicians means that Rosemary feels that she can make a real difference when advocating on behalf of those affected by a brain tumour diagnosis. Outside of work Rosemary is heavily involved with the Feckenham Community Village Shop which is completely volunteer run and does a monthly stint as Junior Church Leader at nearby Inkberrow Church.

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INTERNATIONAL BRAIN TUMOUR ALLIANCE

www.theibta.org International Brain Tumour Alliance (IBTA) PO Box 244, Tadworth, Surrey, KT20 5WQ, United Kingdom email: chair@theibta.org


Report on the First World Summit of Brain Tumour Patient Advocates 2013