IBTA October 2009 E-News                                                                                                            
Dear friend of the international brain tumour community
 
Awareness Week and World Walk: The International Brain Tumour Awareness Week (1-7 November) is almost upon us. We wish to thank the record number of 176 brain tumour and cancer-related organisations who have supported the IBTA’s Week and Walk this year. Dozens of events have been planned (see: www.theibta.org) . With a combined total of 150,598 walking kms achieved to date we are in sight of our World Walk target of 200,000 kms (five times around the World at the Equator).
 
Please use the occasion of the International Week to issue a media statement in your area drawing attention to the need for more research and support to combat brain tumours. An additional news aspect you could mention is that November this year represents the 125^th anniversary of the first documented, modern-day brain tumour surgery for a glioma, performed by Rickman Godlee in London on 25 November 1884 (see the IBTA’s booklet about the subject).
 
ECCO/ESMO: The IBTA had a display at and was represented by Kathy Oliver (Co-Director) and Denis Strangman (Chair) at the Joint ECCO 15 – 34^th ESMO Multidisciplinary Congress at Berlin during 20-24 September. Kathy Oliver also gave a presentation during the patients’ track at the Congress. We thank the organisers for their welcoming attitude to patient advocates, including a greatly reduced registration fee. It was a good opportunity to meet up with scientific contacts, company contacts, and fellow cancer advocacy colleagues, including our friends from the European Cancer Patient Coalition, of which the IBTA is a member organisation and for which Kathy Oliver was selected as the “ Member of the Month” in September. The Congress abstracts are said to be available at this website but there appears to be a technical problem with it. Kathy will also represent the IBTA at the forthcoming AANS/SNO meeting in New Orleans.
 
Mike Traynor: The IBTA was shocked and saddened to learn recently of the death of Mike Traynor, Co-Founder and President of the Pediatric Brain Tumor Foundation of the United States.  Mike (together with his wife Dianne, PBTF Co-Founder) was a great friend and supporter of the IBTA.  Dianne has strongly advised the IBTA that "PBTF will continue its work which Brian [Traynor, Executive Director] and I will continue to give leadership to along with our Board of Directors and staff. Mike and I wanted it that way so that our dream of saving children's lives and helping families would continue. We want people to know that the work of the PBTF goes on."  Please see the IBTA's tribute to Mike Traynor here.
 
Scott Norris: Scott has a GBM and in 2007 he returned to the University of Southern California (Santa Barbara), where he had graduated in psychology many years previously, to talk with psychology students about what it was like to travel with a brain tumour. His 30-minute video presentation is very insightful and will be of interest to patients, caregivers and clinicians alike. In the talk he explains the coping skills he developed and how the disease has affected his life. By the way, in addition to having an MBA Scott is also an artist and was an entrant in the IBTA’s logo competition in 2005.
 
Automatic translation widget survey: Thank you to the 66 contacts with multi-language skills who evaluated the automatic translation program that we included on our website for a short time. We regret to advise that their conclusions about the translated versions were generally “poor” to “average” and we have now removed the program. For example, here was one comment: “ … Walk Around the World for Brain Tumours translated as "Todo el mundo a pie para tumores de cerebro" is dangerously wrong. The Spanish version, literally says "Everybody stand up for Brain Tumors" !”. Another comment was: “The translator does not work well for Slavic Languages”. See here for other comments.
 
We will conduct another survey soon regarding the date for the Awareness Week in 2010. Please respond with your views. We realise that some countries have different dates for their own national/regional awareness days/weeks/months. The IBTA’s week enables an opportunity for international collaboration and unity on a second occasion during the year.
 
In 2010 we plan to publish a one-off magazine-type publication aimed at brain tumour patients and families who are visiting the waiting room of a treatment centre. It will be “popularly” designed and presented, along the lines of magazines that one typically finds in a medical waiting room (but not as ancient as some!). It will contain stories about patients, researchers, clinicians, treatment developments, clinical trials, awareness-raising events, etc. The title needs to be all-encompassing, relevant and catchy but not off-putting. Please convey your suggestions for a suitable title and we will include them in a poll of our 3,500 international contacts.

Avastin: A short article by Drs Michael Weller and Roger Stupp “Approval of new drugs for glioblastoma” is available in PDF format from the journal Current Opinion in Neurology. It concludes with a mention of the possible disadvantages of bevacizumab (Avastin) for glioma. Meanwhile, Roche issued a media statement on 22 September based around the findings of Professor James Vredenburg from Duke, reported at the ECCO/ESMO meeting, in the BRAIN Phase II study which showed possible stablilisation or improvement in neurocongitive function and a reduction in the use of steroids for relapsed or progressive glioblastoma.
 
Italy: Dr Andrea Pace has advised that there will be another brain tumour awareness raising 5 kms run in Rome on 18 October – Corri al Massimo per Irene – organised by L’Associazione IRENE Onlus and in Milan Il Fondo di Gio will organise a walk as they did last year. The organisers have produced a colourful and attractive brochure which can be downloaded from here.
 
EPPOSI (European Platform for Patients' Organisations, Science and Industry) will hold its "10th Workshop on Partnering for Rare Disease Therapy Development" in the Belgian Federal Parliament building on Monday, 26th and Tuesday, 27th October. As part of this two-day conference, there will be a half-day session on "Rare Cancers".  Kathy Oliver (IBTA Co-Director) will be speaking in this session on the patient and caregiver perspective of health technology assessments (HTA).  While visiting the US National Brain Tumor Society (NBTS) recently IBTA Chair Denis Strangman discussed the concept of rare cancers with Deputy Executive Director Mark Cole. Mark is engaged in work relating to what is described as the “lethal cancers” (which includes lung and brain). Other people use terms such as “intransigent” or “less common” cancers for those that need particular attention.
 
Hong Kong: Dr Danny Chan advises that he and his associates will organise another Brain Trekking awareness-raising walk in Hong Kong on 28 November. They have a new website for the CUHK Brain Tumour Centre. Danny kindly arranged the translation into Mandarin of some IBTA materials for use in Taipei at a forthcoming neuro-oncology conference. IBTA Chair Denis Strangman will attend the Taipei conference where he will give a presentation to the “meeting open to the public” and have a display on behalf of the IBTA. Copies of the IBTA’s book about the first glioma operation will be distributed at the Taipei Conference and also at another brain tumour conference being held in Hong Kong in January. There is a great need to ensure that the standard of care available in developed countries is available, at an affordable cost, to brain tumour patients in Asian and other countries. Thailand is one example, do any of our readers have contacts in that country?
 
Japan: Masako Itaya advises that the Japan Brain Tumour Alliance has uploaded a webpage in Japanese about the Walk Around the World for Brain Tumours on its website. The Pediatric Brain Tumour Network in Japan has also been active, holding a walk and organising a proposed conference for October. A photo of the group’s very clever logo “which means to help each other to get back our smile”, can be downloaded as a JPEG file from here. Walks and awareness-raising events being organised in other countries have been listed on the IBTA website.
 
Australia: Representatives of our supporting organisation Brain Tumor Alliance Australia (BTAA) will attend the ASM of the Clinical Oncological Society of Australia to be held in Queensland during November, where there will be a focus on brain and lung cancers. BTAA has developed further its partnership with the Australian depression group Beyond Blue to produce a brochure on brain tumours and depression. There is also collaboration with researchers in the UK on the project. We note with interest the proposed merger of the Melbourne-based company Cytopia, which is trialling a vascular disrupting agent CYT997, with the Toronto-based YM BioSciences Inc company.
 
Partnership: On 29 September 2009, more than 300 cancer organisations, patients and cancer survivors, health professionals, researchers, health authorities and health ministers gathered in Brussels to mark the official launch of the "European Partnership for Action Against Cancer". As part of this initiative a special cancer map of Europe was also launched, featuring a patient from each of the 27 EU Member States including brain tumour survivors nominated by the IBTA: Elisabetta Camporeale from Italy and Alexander Johansson from Sweden. Frank Boeye represents Belgium.  See the cancer map and patients' stories here.
 
Marguerite Sciuk: It is with deep sorrow that the IBTA learned of the untimely death on 29 September of Marguerite Sciuk, Founder and President of the Brain Tumor Resource and Information Network (B.R.A.I.N.) in the United States.  Marguerite (who herself had a brain tumour), and her husband Kevin, worked tirelessly, generously and devotedly supporting brain tumour patients, their families and caregivers not just in the United States but also further afield in Zimbabwe where the Sciuks formed close links with Christine Mungoshi of the Zimbabwe Brain Tumour Association (ZBTA).  Marguerite and Kevin attended the IBTA's foundation meeting at the World Federation of Neuro Oncology conference in Edinburgh, Scotland in 2005 and were long-term supporters of the IBTA.  A tribute to the life and work of Marguerite can be found here.
 
North America: IBTA Chair Denis Strangman attended and spoke briefly at the Brain Tumor Advanced Treatments Conference held in Ashland (Oregon) during 17-19 September. The meeting was organised by the Musella Foundation (Al Musella) and patient advocate John Williams, with the help of the C.E.V.A.N. Louie Foundation for Brain Cancer, and Genentech. Video from the patient and caregiver-oriented conference will be placed on-line soon. It was very useful to meet with members of the Brain Research Yahoo Group from which the conference evolved. One of the scientific presenters commented “I don’t get asked questions like this (of such incisiveness) at scientific conferences!”
 
While on the West Coast Denis also met with Mark Cole (Deputy Executive Director), Mary Lovely and Sharon Lamb from the National Brain Tumor Society and visited officials from the Amgen company and from the distributors of the stereotactic radiosurgery device CyberKnife (Accuray) and its inventor Dr John Adler at Stanford University Medical Center. Interestingly, Stanford has a sign in the Center pointing to where patients may connect with their trained volunteer “ patient navigator”. This is a concept that could be copied elsewhere.
 
Grandma Pat: This might be an unusual title but it refers to a long-term GBM survivor (8 years) “Pat” in the USA whose journey has been chronicled on a website by one of her daughters with messages from family and friends. The daughter, Wanda, reports that life continues and just now they are preparing for an eleven-day State Fair where they have a food booth. Websites and stories of this nature can offer hope to newly-diagnosed patients and there is a good collection of similar stories on the Virtualtrials website.
 
Brain screening: A study in the British Medical Journal, involving the analysis of almost 20,000 brain scans, concluded that brain screening for health reasons is not justified, despite the identification of incidental findings of 2.7% on brain MRI. The IBTA has embarked on a major task of informing our colleagues in the cancer control movement that an emphasis on screening, early detection and prevention, is just not relevant to priorities in trying to combat brain tumours. Our immediate needs involve more research funding and better patient and family support. We understand that our friends at Methodist University Hospital at Memphis, who conduct the on-line neurological analysis program, Virtual Brain Tumor Board, experienced similar challenges when they attended the Lance Armstrong international anti-cancer meeting in Dublin (Ireland) recently. Incidentally, they have now produced a smaller version of their popular hologram card showing a patient’s head and brain.
 
Professor Abhijit Guha: Ab Guha, former Chair of SNO, had many friends around the world concerned for his health and welfare after he developed a challenging illness. We heard that he was much better and asked if we could report this. Ab responded: “Please do mention and give my thanks to all for their friendship and support”.
 
UK developments: Consultant neurosurgeon Mr Charles Davis (Lancashire Teaching Hospitals NHS Foundation Trust, United Kingdom) is the newly-elected President of the British Neuro-Oncology Society (BNOS) and will continue in this role for the next two years. Charles has been a great supporter of the International Brain Tumour Alliance. He assisted in the preparation of the IBTA's recent booklet on "The First Documented, Modern-Day Brain Tumour Surgery for a Glioma" by kindly allowing us to reprint his own article on the subject (co-written with Mr Robert Bradford, also a British neurosurgeon) in the booklet. Meanwhile, oncologist Dr David Levy, who had a particular interest in brain tumours, has moved from the UK to head the British Columbia Cancer Agency in Vancouver (Canada).
 
Thank you for your continuing support.
 
Denis Strangman (Chair and Co-Director)                                     
International Brain Tumour Alliance IBTA 
www.theibta.org

Kathy Oliver (Co-Director)
PO Box 244, Tadworth, Surrey
KT20 5WQ, United Kingdom
Tel:+ (44) + (0) + 1737 813872
Fax: + (44) + (0) +1737 812712
Mob: + (44) + (0) + 777 571 2569
 
The International Brain Tumour Alliance is a not-for-profit, limited liability company registered in England and Wales, registered number 6031485.  Registered office: Roxburghe House, 273-287 Regent Street, London W1B 2AD, United Kingdom.  All correspondence should be sent to the Co-Director’s address above, not to the registered office.