IBTA E-News January 2010
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Dear Friend of the International Brain Tumour Community
Walk Around the World for Brain Tumours: Congratulations to all those who took part in awareness and/or fund-raising walks as part of the IBTA’s “Walk Around the World for Brain Tumours” during 2009. Our target was 200,000 kms, or five times around the world at the Equator, and the walkers achieved a massive 226,590 kms. There were 92 walks in thirteen countries (Australia, Canada, France, Hong Kong, India, Italy, Japan, Lithuania, Netherlands, Spain, UK, USA, and Zimbabwe) and the 38,114 participants raised the equivalent of at least $3.4 m USD for local brain tumour charities and research organisations (no funding goes to the IBTA). Well done! Thank you to Tara Gent for maintaining our statistics. The Awareness Walks, which can take place at any time during the year, have now become an established event.
Awareness Week in
2010: We wish to thank those who responded to the survey about the
preferred Awareness Week in 2010. While each of the first three weeks in
November were supported there was a clear majority in favour of Sunday 31 October – Saturday 6 November
2010. Please mark those dates in your calendars. While we recognise that
countries and local regions may have their own awareness days, weeks and
months, the International Brain Tumour
Awareness Week provides an opportunity to join in a global awareness
raising exercise in addition to local events at another time of the year. Visit
here, here and here for reports of
activities held in 2009 by our supporting organisations.
Magazine name: We are still deliberating about the most appropriate name for the magazine that we plan to produce in 2010. Thank you for your participation in that survey question.
Clinical trials:
In the
In
Responses to a survey conducted by the IBTA about an unnamed trial which might involve a voluntary neurosurgery delay of two weeks by suspected glioblastoma patients has produced a wealth of useful information. The survey was intended to obtain responses from patients and caregivers but it is obvious from the technical language of many of the comments that health professionals also answered the survey. The overall result was 60:40 in favour of the delay before we had to close the survey for reasons beyond our control and we apologise to those who wished to respond but could not do so. Comments by the respondents are accessible here. What is troubling among the responses is the implied suggestion that because of the failure of other approaches and the lack of existing therapies, all possible approaches should be tried for glioblastoma treatment even if there are ethical or other concerns.
GliomaEd: The very useful website www.GliomaEd.com has a new tutorial by Dr Timothy Rykin on “The Impact of Extent of Resection on Survival in Glioblastoma” and a new E-Monograph on “Combination Radiation and Chemotherapy: Targeting Therapy for Newly Diagnosed Glioblastoma”, both of which are useful and easy to follow.
Drug development:
Ark Therapeutics Group announced just before Christmas that it had received
notice from the European Medicines Agency (EMEA) that the European Committee
for Medicinal Products for Human Use (CHMP) has adopted a negative opinion for
Ark's marketing authorization application (MAA) for Cerepro, Ark's novel
gene-based therapy for operable malignant glioma. The filing was based on
results from the "904" phase III trial and
Also before Christmas a report on the EORTC study 26041-22041, which was a Phase I/II study on concomitant and adjuvant temozolomide and radiotherapy with Vatalanib in newly diagnosed GBM, noted that “The planned randomised phase II trial was discontinued right at its onset due to industry decision not to further develop this agent.”
GBMs’ “master control knobs”: This is a link to the abstract of an article in Nature (23 December 2009) reporting the discovery of two genes (C/ERB and Stat3) that, when simultaneously activated, work together to turn on hundreds of other genes that transform glioma brain cells into highly aggressive, migratory cells. (See this article in Sciencecentric for a more populist interpretation of the mechanism). The suggestion is that a combination therapy designed to silence both genes simultaneously may offer a powerful new way of tackling glioblastoma brain tumours.
Paediatric brain
tumours: Dr Annie Huang and colleagues from the Hospital for Sick
Kids at
Book review: We have added another review to the publications section of the IBTA website, which contains reviews of books about brain tumour patients and caregivers. It is a review of Kathleen Price’s story of her daughter Leslie’s journey with a brain tumour and her interaction with family, friends and health professionals. This is an excerpt from the review: “Leslie obviously had a wonderful sense of the ridiculous. Due to be discharged from a hospital she wanted to surprise her treating physician and dressed in a hairy gorilla costume and asked the nurse to summon the Doctor. Hurrying to her bedside he exclaimed after a brief look: “Acute Vincristine Retrograde Syndrome!”
This is a link to excerpts from an unpublished book “Memoir of a Shakespeare Professor” by the late Professor Adam Cohen (University of Massachusetts, Dartmouth) who developed a brain tumour which forced him to refocus his studies: “How can I be a teacher, I wondered, if I can not even explain that I want a sandwich for lunch? The technologies and techniques on which I usually relied were unusable, my standard place in the world lost. Like so many of Shakespeare's characters I had been yanked out of a life in which my place was certain and thrown into a maelstrom, an Arden Wood of the mind and spirit, a Prospero's island where I had no idea who I was or where I belonged.”
Genesis conference: IBTA Co-Director
Kathy Oliver was a plenary speaker at the ninth annual Genesis conference which
took place in
Neurological surgeons: The Society for Neuro-Oncology has drawn its members’ attention to a new initiative of the AANS/CNS Section on Tumors and the Congress of Neurological Surgeons entitled: Controversies in NeuroOncology: An Academic-Community Forum. These consist of seven 90-minute on-line discussions (Webinars) about key aspects of brain tumour treatments. They commenced on 12 January and will conclude on 13 July. Participants have to register and are asked for details of their Board Certification and sub-specialty. Each Webinar costs $35 USD to join. Unlike the Virtual Tumor Board, which permits patient and caregiver observational (non-participation) status, it is unknown if the same applies in this case.
The
initiative comes under the (
IBTA website: From time to time we look at the statistics for the IBTA website (www.theibta.org) Visits to our listing of scientific and patient conferences remain high at 273 last month, closely followed (231) by our detailed report on brain tumour-relevant items at the COSA conference, at which Roger Stupp and Norman Laperriere participated. Conference organisers should submit details about forthcoming meetings to Chris Tse, who looks after this part of the IBTA website.
International conference: We note the
proposed International Brain Tumour Research Conference to be held near
Frankfurt during 24-26 March, 2010, which is an initiative of the
There is also the 16th Neuro-Tumor Club Dinner
Meeting which will take place on 19 April during the AACR Annual Meeting in
Brain tumour logos: After the IBTA was formed in 2005 we conducted an international competition for an appropriate logo. There were 32 entries which can be viewed here. A panel of 10 judges in 2006 selected the design for the IBTA's logo. That left 31 brain tumour-relevant designs of a very high standard which are capable of a slight reconfiguration for use by other organisations. Since 2006 at least two groups have contacted the relevant graphic designers and negotiated a similar design for their organistaion. We will be happy to try and establish contact with individual designers should other brain tumour organisations wish to pursue one or other of the logo competition design concepts. Contact IBTA Co-Director Kathy Oliver.
Godlee booklet: Copies of the booklet about the first documented modern-day surgery for a glioma brain tumour, which was written and researched by the IBTA Co-Directors, have been distributed extensively. Individual copies are still available via the IBTA website and sufficient bulk copies are available under certain conditions for distribution at relevant conferences.
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,
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