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IBTA E News October 2010
If you are having difficulty in reading this E News please go to the web version.
Dear Friend of the International Brain Tumour Community
Awareness Week: The Fourth International Brain Tumour Awareness Week commences on 31 October and concludes on 6 November, together with the Walk Around the World for Brain Tumours. Almost 200 brain tumour and cancer-related organisations worldwide (an increase from last year) have supported these two awareness-raising activities. See the IBTA website for reports on completed walks and proposed events. If considered appropriate, please distribute a media release in your local area during the Week to contribute to the overall awareness-raising.
FACE: Last June, the European Cancer Patient Coalition (ECPC) launched the Forum Against Cancer Europe (FACE) which involves MEPs (Members of the European Parliament). On 15 September a FACE workshop was held and a dossier was presented to the European Commissioner for Health and Consumer Policy John Dalli which included background on the situation for cancer patients in Europe. Profiles of four European brain tumour patients in contact with the IBTA or its supporting organisations were featured: Frank Boeye (Belgium), Ingele Meulenbergs (Belgium), Alexander Johanssen (Sweden) and Tina Hogg (UK).
David M Bailey: Singer and songwriter David M Bailey, who was a hero in the brain tumour community, died in Virginia on Saturday 2 October. The IBTA distributed a Media Release about this remarkable man. This is a link to the family's message about his passing. These are links to four other public tributes: Virginia Gardner, PGH Post Gazette, Faith Life Blog, Presbyterian News Service.
Primer: The American Brain Tumor Association (ABTA) has produced the ninth edition of its popular “Brain Tumor Primer”, which is available in hard copy from the ABTA, or as a downloadable PDF file (2.2 Mbs) from here. The book is slightly larger (76 pps) than its predecessor edition but contains new or revised content in several areas, including the tumor and treatment sections, brain tumor clusters, statistics, testing, brain stem glioma, and seizures.
NBTS Award: On 21 September the IBTA was presented with the Community Leader Award for Awareness for its “insights and work” at the Annual Meeting of the National Brain Tumor Society (NBTS) held in San Francisco. We are most honoured to receive this Award which is shared internationally with all who help the IBTA with its global work.
Brain tumours and depression: Our colleagues in Brain Tumour Alliance Australia (BTAA), in conjunction with the anti-Depression organisation Beyond Blue and Dr Ally Rooney (Scotland) and others, have produced a six-page Fact Sheet on “Brain tumours and depression and anxiety disorders” which can be downloaded from here. It will be launched in the Australian Parliament on 28 October at a meeting hosted by Senator Catryna Bilyk who herself has a brain tumour. BTAA and Beyond Blue are happy for the contents of the Fact Sheet to be reproduced in other countries as long as appropriate credit is given to both sponsoring organisations and the contributors. Contact details for relevant follow-on counselling services will need to be altered to align with what is available in your area.
UK brain tumour manifesto: A UK coalition of charities has called on the Government to join society’s fight against brain tumours. Brain Tumour Research, Brain Tumour UK and the Samantha Dickson Brain Tumour Trust, with the International Brain Tumour Alliance, launched a “Manifesto for Everyone Affected by a Brain Tumour” at a meeting attended by 200 people in the UK Parliament. They hope to persuade the new Government to work in partnership with them to improve outcomes in diagnosis, patient care and research. A media release and the manifesto can be downloaded.
NovoCure: NovoCure’s Tumour Treating Fields (TTF) device continues to be debated in oncology circles. In a non-brain tumour study NovoCure presented promising results at the recent ESMO meeting of a Phase II trial in non-small cell lung cancer. The trial involved using the device with chemotherapy. A brain tumour-relevant study will be presented at the forthcoming meeting of the Society for Neuro Oncology. There are now 26 locations involved in the brain tumour study.
Cerepro: Earlier this year, following the rejection of the MAA (Marketing Authorisation Application) for Cerepro, Ark Therapeutics carried out an extensive strategic review of its operations and concluded that it could only go forward to complete the development of Cerepro if it had a partner to fund the costs of the additional trial requested by the regulators. A Company spokesman said recently: "We are firmly convinced of the clinical benefit of Cerepro and have launched an initiative in the USA and Europe to find a bigger company partner to work with us on bringing the product to market". Cerepro is a novel gene-based therapy for operable high grade glioma.
European conferences: A comprehensive report by IBTA Co-Director Kathy Oliver of highlights from four recent conferences she attended may be accessed here as a Word document (1.2 Mb) and here as a HTML document. The conferences were: EORTC - Future of Independent Academic Clinical Research in Europe, Brussels, 2 September 2010; Roundtable – Treatment and Support of Brain Tumour Patients and their Families, Brussels, 11 September 2010; European Association of NeuroOncology (EANO) Ninth Meeting Maastricht, The Netherlands, 16 – 19 September 2010; and the European Society for Medical Oncology (ESMO) 8th Patient Seminar, Milan, 9 - 10 October, 2010.
Society for Neuro Oncology (SNO): The abstracts for the forthcoming SNO annual meeting in Montreal are available here. Denis Strangman (Chair IBTA) plans to attend the SNO conference and will have available copies of the IBTA magazine “Brain Tumour” for those who have not yet received a copy. Work has already commenced on a 2011 edition of the magazine.
CERN: The CERN (Collaborative Ependymoma Research Network) Foundation has announced via an item in Nature magazine “… the discovery of the first gene, called EPHB2, which is proven to cause ependymoma, and how ependymomas in different regions of the nervous system arise when subtypes of stem cells found there acquire specific mutations.” CERN also has a potentially useful on-going Outcomes Project for this type of brain tumour.
Re-irradiation: The concept of re-irradiating recurrent high grade gliomas by hyperfractionated stereotactic radiation therapy (H-SRT) is increasingly being discussed in the brain tumour community and has even filtered down to patients. A paper by Dr Shannon Fogh from Pennsylvania in the Journal of Clinical Oncology and papers at the recent EANO meeting have elevated the subject to prominence. Dr Fogh acknowledged the hesitancy of some in the profession when she told Medscape Oncology: "In the eyes of many patients, neuro-oncologists, and even radiation oncologists who do not treat a large volume of brain patients, the concept of brain re-irradiation, particularly with such large doses given to the area previously treated with radiation therapy, seems dangerous and prohibitive.” Her paper seeks to present an alternative view.
New book by brain tumour survivor: American engineer Jerry D. Kline, who is a six-year survivor of a glioblastoma multiforme brain tumour has written a book about his journey. The IBTA has reviewed his book, which is available here. Jerry’s story is firmly founded in his Christian-based commitment. Fellow patients will find helpful hints for daily living and medical professionals might find it useful as an insight into the thinking of a very proactive patient. Jerry has spoken in Poland about his experiences and is now considering a trip to China.
Survey: A unique group of people from the international brain tumour community receive these regular E-News bulletins. The IBTA plans to conduct another survey of its contacts about aspects of the brain tumour environment. Our last survey was about revealing your diagnosis publicly and 363 readers responded and provided some valuable insights which were published in a de-identified form in our magazine.
In this new survey we would like to focus on how a patient’s treatment and their family’s support could be improved. While it is still at the drafting stage could you please recommend suggested questions that might be useful for this survey (chair@theibta.org) On a lighter note we may also ask patients for their experiences with an MRI machine. Jerry D. Kline (see book review above) says that his machine makes noises which sound like it is telling him: “Don’t smoke … Don’t smoke … Don’t smoke” in a repetitive fashion. One person likened the experience to placing your head in a washing machine!
Thank you for your continuing support.
Denis Strangman (Chair and Co-Director)
International Brain Tumour Alliance IBTA
www.theibta.org