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IBTA December 2010 E-News

Posted on: 12/16/2010

IBTA December 2010 E-News
Please click here to view a web version of this E News.
SNO and Canada: Because of problems with Qantas airlines the IBTA Chair Denis Strangman made a long detour from Australia via Japan to attend the Society for Neuro Oncology Conference in Montreal, Canada. While in Canada he met with staff of the Brain Tumour Foundation of Canada in London, Ontario, and the next day appeared before the Canadian Parliamentary Committee on Palliative and Compassionate Care in Ottawa. A brief report from Denis is available here, in which he notes the continuing discussion about aspects of Avastin and the encouraging focus on quality of life issues at the SNO conference.
Presentations: Since the last E-News IBTA Co-Director Kathy Oliver has delivered two presentations in Germany and three in Belgium, including at a meeting organised by the Belgian Association for Neuro Oncology. Two presentations referred to patient involvement in clinical trials, including at this conference organised by EORTC. Kathy also participated in an ESMO (European Society of Medical Oncology) video interview about her patient advocacy work.
Walk Around the World for Brain Tumours
: We still have to receive much more information about individual walks but for those walks we know about that occurred during 2010 in countries from Algeria to Zimbabwe, 26,326 walkers covered 136,547 kms and raised the equivalent of $4.5m USD for brain tumour research and support. There are four pages of reports and photos of events on the IBTA website under the 2010 Walk and Week link in the left hand column.
Dates for 2011 Awareness Week: Thank you to the 341 contacts who responded to a survey about the preferred dates for the 2011 International Brain Tumour Awareness Week. 51% chose 30 October 5 November, 26% 23 29 October, and 23% 6-12 November, so we will go with 30 October 5 November 2011, which corresponds to the dates for this year. In 2010 197 brain tumour and cancer-related organisations worldwide supported the Awareness Week and the World Walk.
Drugs in development: In an E-News last year we reported on the drugs in development that were being trialled for brain tumours, either for adult or paediatric, and either for new or recurrent. This is a link to a webpage containing a PDF prepared by the US PHRMA organisation showing the drugs in development for cancer as at 2009. Page 3 onwards lists those for Brain Cancer, of which there are 61. At the same time there are 1346 open trials for CNS tumors listed on the US Government website for clinical trials. This might sound like there is a lot of activity, and there is, but as far as the individual drugs are concerned the list can be deceptive trials can be abandoned and further development held in abeyance, for any number of reasons, including difficulty in obtaining finance, or even strategic policy decisions taken by senior management of sponsor companies. Be that as it may, the list might be of interest to some readers.
Alternative therapies: Dr Oliver Heese from Hamburg, in a survey of 621 patients on behalf of the German Glioma Network, has found that 40.3% of patients said they used complementary therapies. Complementary therapy was defined as methods or compounds not used in routine clinical practice and not scientifically evaluated. The results were published in the journal Neurology and comment appeared in Medscape Medical News. 73.7% of users of complementary therapies were younger than 50 and more likely to be women. The therapies included homeopathic therapy, vitamins and psychological therapy and most patients did not volunteer this information to their treating physician.
Patient experiences: In an IBTA global survey about experiences of brain tumour patients with medical staff after their diagnosis a majority of patients and caregivers were generally satisfied with their experiences, except for one notable exception only 28% of respondents were given information about support groups, brain tumour charities, or non-profit support organisations. Of course, such groups might not exist in their local area but the result indicates the need for greater attention to this issue, particularly where groups do exist and patients are not being told about them.
Non-Communicable Diseases (NCDs): The IBTA has alluded in the past to an emerging problem in the lead-up to the 2011 World Summit on NCDs, namely that there is a tendency to focus on prevention and to neglect the research and support needs of cancer patients, particularly those with a less common or rare cancer such as brain tumours which are incapable of prevention. The IBTA is spearheading an international campaign for signatories to an Open Letter to UN Summit delegates about this subject. You will soon receive an invitation to add your support to this Open Letter.
Zimbabwe: The Zimbabwe Brain Tumour Association has put together a summary of the type of brain tumour cases that they have to deal with. It can be accessed as a PDF file here. These cases can be very challenging and are probably only the tip of the iceberg. Judging from the enquiries we receive from desperate patients and their families the treatment facilities in many developing countries are virtually non-existent. The IBTA is unable to give financial assistance, however deserving the case might be.
IBTA magazine: We have decided to compile and publish another issue of Brain Tumour magazine in 2011. In 2010 our magazine was 114 pages in size and 10,000 copies were distributed for free in 83 countries. In 2011 we will aim for even more pages and will print 12,000 copies but on light-weight glossy paper we have been conscious of prospective readers at conferences concerned not to return home with excess weight in their luggage.
Book review: After reviewing Jerry Kline's book of his experiences as a patient with a glioblastoma, Jerry asked Are there any other similar books? There are but they tend to be only known in their country of origin. Here is a link to a review of another book written by a patient and entitled A Deadly Intruder My Fight Against Brain Cancer by Canadian patient Gilles Cayouette, which is available in French and English. We hope to review another book by a patient, this time from South Africa, for the next E News.
Cyprus: A new brain tumour patient support group called the Cyprus Brain Tumour Association held its first public meeting on 12 December. We wish them well. The IBTA carries links on its website to all known national brain tumour patient support groups.
Trabedersen (AP 12009): Just before the SNO meeting Antisense Pharma drew attention to the published  efficacy results for its Phase IIb study involving recurrent or refractory AA and GBM patients (U Bogdahn et al), which it described as encouraging, and mentioned that the subsequent Phase III study (the SAPPHIRE study) was now being conducted in about 50 study centres worldwide. A poster about the Phase III trial was displayed at SNO.
Deadlines: The deadline for abstracts for the 3rd Verona Neurosurgical Symposia - Measuring Clinical Outcomes in Neuro-Oncology: Tools and Parameters, to be held during 28-29 January, 2011, is 20 December 2010. The Society for Neuro Oncology has extended to 31 January 2011 the deadline for the next International Outreach Fellowship which is for professionals from outside North America to perform clinical, translational or basic research in paediatric or adult neuro-oncology in the US or Canada. Further information is available here. The deadline for abstracts for SNOs May 19-20 Pediatric Neuro-Oncology Basic and Translational Research Conference is 24 January. Further information is available here. The early rate registration deadline for the EORTC-EANO Trends in Central Nervous System Malignancies Conference in Bucharest, 25-26 March 2011, is 14 January 2011. Further information is available here. The deadline for abstracts and junior travel award submissions for the Brain Tumour Epidemiology Consortiums 5-7 June Conference is 15 January. Further information is available from Jeri Dolan here.
David M Bailey: A CD with Christmas songs is available from the website for the late David M Bailey, prolific song writer and singer, and long-term glioblastoma survivor who passed away on 2 October. This is a link to David singing Tucson. There has also been a re-release of his Life CD. Professionally produced canvas wraps (large photo images printed on canvas) with the words from his song Words of Wisdom are also available (to benefit his family) here.
Best wishes: We extend best wishes to all our readers for a happy holiday season and our hope that 2011 will be a rewarding and successful year for you and your loved ones.
Thank you for your continuing support.
Denis Strangman (Chair and Co-Director)                                     
International Brain Tumour Alliance IBTA

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-Directors address above, not to the registered office.


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