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IBTA Newsletter

Posted on: 03/30/2008

Dear friend of the international brain tumour community

2008 has started out as a very busy year for the International Brain Tumour Alliance (IBTA).

Following a survey of our contacts we have decided to repeat the Walk Around the World for Brain Tumours and the International Brain Tumour Awareness Week, which will be held during Sunday 26 October - Saturday 1 November 2008. Walks can take place at any time between 1 January and 1 November. The objective is to circle the earth at least three times. A brochure about these awareness-raising activities (now supported by 126 organisations) is available here and a FAQ (Frequently Asked Questions) document is available here.
The IBTA secretary Kathy Oliver has been busy with a number of presentations, including the Hammer Out Patient/Carer conference near Exeter, Devon, on 9 March and the SDBTT Astro Fund Brain Tumour Information Day on 17 March. Kathy has also had articles published in The British Journal of Neuroscience Nursing and The Parliamentarian, the latter being distributed to all Members of the European Parliament. IBTA Chair Denis Strangman made a presentation to the Strategic Planning Meeting of the Australian Genomics and Clinical Outcomes of High Grade Glioma (AGOG) group in Sydney on 6 March 2008.
Media statements were also released by the IBTA for World Cancer Day, which generated several radio interviews, and European Rare Disease Day. A submission was also made to the UK NICE organisation in opposition to NICEs rejection of the Rule of Rescue in its work of evaluation and appraisal of health therapies. Kathy Oliver also attended the IV International Conference on Future Trends in the Treatment of Brain Tumours held at Bologna, Italy.
In recent articles by the IBTA spokespeople you will note a common theme – that while prevention, early detection, screening and healthy living are all good in themselves and are very worthy as priorities for cancer control programs, they are irrelevant for the prevention of brain tumours, whose causes are largely unknown. Brain tumours require an emphasis on research, support and advocacy. We will develop this message further during 2008.
A recent news item reporting on the use by UK neurosurgeon Dr Henry Marsh of a handyman drill during surgery on a brain tumour patient in the Ukraine focussed attention on the standard of care available in developing countries. The IBTA has brought together an advisory group to guide our strategy in this area. We are currently focussing on the appropriateness of a small survey of the standard of care available to brain tumour patients in a representative sample of developing countries so that we can improve the data available and guide our policies on this subject. We would welcome indications of interest in this subject by others.
The IBTA will either exhibit at, attend, or make presentations at three conferences to be held in Europe after Easter: The Perspectives in Central Nervous Systems Malignancies 4 conference in Berlin, the Brain Tumour Epidemiology Consortium meeting in Heidelberg, and the European Cancer Patient Coalition meeting in Brussels. We also plan to exhibit at the ASCO conference to be held in Chicago later in the year. Chris Tse (NZ) maintains for the IBTA and the brain tumour community generally what we believe is one of the most comprehensive listings of scientific and patient/caregiver conferences, which is available on-line here. Organisations are welcome to link to it from their own website. Please notify Chris of any conferences to be held in your region.
We hope to initiate soon an on-line survey about the standard of care for brain tumour patients. All those who complete the survey will be sent a free copy of a 16-track inspirational CD by singer, songwriter and brain tumour survivor David M Bailey.
Finally, due to the receipt of an unanticipated grant we have been able to consider the publication of a commemorative booklet containing reports and photos of many of the worldwide awareness-raising events held during 2007.
Thank you for your continuing support.
Denis Strangman (Chair)                                     
International Brain Tumour Alliance IBTA

Kathy Oliver (Secretary)
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 Secretary's address above, not to the registered office.
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