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IBTA Newsletter


Posted on: 08/25/2008

Dear Friend of the international brain tumour community
 
Olympics:
With recent news focussed on the Olympics let us not forget the inspirational Scots runner Eric Liddell who steadfastly followed his beliefs and was portrayed in the film Chariots of Fire. He was interned during World War II in a prisoner of war camp in China and died from a brain tumour just before the end of the War.
 
Website links:
Help us to help you - We understand that the Google page rank algorithim is based on the number of external links to one's website. We are happy to link to your website so that those with an interest in brain tumours will quickly locate you. We would be grateful if you could link to the IBTA web site (www.theibta.org) in return, for our mutual benefit and that of patients, families, caregivers and professionals who work in the field of brain tumours.
 
Conferences: The IBTA will be represented at the World Cancer Congress to be held in Geneva next week. We have prepared a large poster for display which seeks to convey the main messages about brain tumours to the 2,000 cancer control delegates from around the world who will be attending. It is both stark and direct but also positive and can be downloaded from here.
 
A further version incorporating the dates of the World Walk and Awareness Week will be available soon. We are looking for volunteers who could translate the content into their own language and convey the text to the IBTA for the preparation of multi-language versions. Contact the Chair: chair@theibta.org Following the Geneva meeting the IBTA will be represented at the EANO (European Association of Neuro Oncology) conference to be held during 12-14 September in Barcelona.
 
Singapore: The IBTA Chair will meet with members of the Singapore Brain Tumour Support Group on 2 September.
 
Palliative Care: The IBTA, together with eighteen other global organisations, including the International AIDS Society, International Psych Oncology Society, and the World Institute of Pain, was invited to and has signed the Joint Declaration and Statement of Commitment Palliative Care and Pain Treatment as Human Rights. We are conscious that many brain tumour patients are, unfortunately, involved with palliative care because of the nature of their disease.
 
Low and middle income country project: This IBTA project, which seeks to obtain a snapshot of the standard of care received by brain tumour patients in a representative sample of low to middle income countries is continuing. Letters have been sent to the leaders of cancer control organisations from a number of relevant countries who are attending the World Cancer Congress seeking to discuss their possible involvement with the project.
 
Submission to NICE: The IBTA, in conjunction with Brain Tumour UK and Meningioma UK, has made a submission to the UK NICE (National Institute of Clinical Excellence) concerning QALYs (Quality Adjusted Life Years) and the severity of illness. A copy is available here.
 
BTUK Patient Conference: A presentation by IBTA Secretary Kathy Oliver to the Birmingham patient conference organised by Brain Tumour UK may be downloaded from here. Kathy refers in her presentation to several emerging therapies of interest to brain tumour patients
 
Patient access to their genetic information: In both the UK and Australia the IBTA has been involved in discussions of the rights of brain tumour patients who donate tissue or blood for research, to obtain access to their genetic information which might assist them with identifying promising new therapies based on genetic markers.
 
Book reviews: We have added a review of a new book of interest to brain tumour patients, Life’s Mountains by eight-year GBM survivor Cheryl L Broyles from California, to our publications area. The review may be accessed here. We believe that newly diagnosed patients will find it of help and inspiration.
 
IBTA awareness-raising book: The 92-page book published by the IBTA in the UK and Australia to commemorate the global achievements of the World Walk and Awareness Week in 2007 has been very well received. A selection of comments from readers is available here where patients, caregivers and family may also request a complimentary copy (depending on stock supply).
 
David M Bailey Tour: Things are shaping up very well for an excellent Northern European tour, organised by the IBTA during the Awareness Week, of the UK, Sweden and Denmark by US singer, songwriter and brain tumour survivor David M Bailey. Brain tumour support groups in the UK, Sweden and Denmark are involved.
 
Zimbabwean sculpture: The IBTA was honoured recently by the presentation of a very special tribute to the organisation by Christine Mungoshi of the Zimbabwe Brain Tumour Association (ZBTA) who is currently visiting the UK.  The ZBTA commissioned Zimbabwean artist Dominic Benhura to recreate the IBTA's logo in stone. Dominic, one of Africa's most outstanding sculptors is well-known for his emphasis on form and movement in his work.  In 2003, a massive Dominic Benhura sculpture called "Swing Me Mama" was presented to Nelson Mandela in Johannesburg, South Africa.  This 1,000 pound piece now sits outside of Mr Mandela's office.  The IBTA sculpture, generously donated by the ZBTA, is somewhat smaller (!) but no less gratefully received and very much appreciated.
 
Awareness-raising walks and the World Walk: Many groups have again notified the IBTA of brain tumour fund-raising and awareness-raising walks in which the combined distance walked has been contributed towards the World Walk target of three times around the world at the Equator (120,000 kms) and the funds raised have gone to local brain tumour research and support groups (not the IBTA). Here are some recent reports. Please contact the Chair if we have omitted to report your event:
 
IBTA advisor Sally Payne and her group donated a combined distance of 1,163 kms achieved during their recent visit to Europe.
 
Susan Marshall from the Brain Tumour Foundation of Canada advised that 4,500 participants in the BTFCs 2008 Spring Sprint walked a total of 16,300 kms and raised $1.38m for brain tumour support and research.
 
Peter Buller, a twenty-five year survivor of a brain tumour walked 290 miles from Glastonbury to Walsingham (UK) in May and June.
 
Mike Logsdon from the National Brain Tumor Foundation (NBTF) reported that there were 1525 participants in the 2008 San Francisco Bay Area Brain Tumor Walk and Angel Adventure and 821 at the Denver Walk. The two walks raised over $1.05 m.
 
Tim Erickson from the Victorian Racewalking Club in Australia advised that walkers on 12 July covered a combined distance of 437.5 kms and raised $750 for the Royal Melbourne Hospital Neuroscience Foundation.
 
Peter Bennett from Brisbane, Australia, advised that on the same weekend racewalkers in Queensland covered 156 kms and donated the funds raised to the Cancer Council Queensland. Peter himself had just returned from France where he had come 2nd overall in the Paris-Colmar stages race, covering 173 kms in 19 hours 30 minutes. He also won the Rouen 24-hour international walk covering a distance of 214.65 kms. Peter has donated both distances covered to the World Walk target.
 
Matthias Preusser and Christine Marosi and the Viennese Scout Group 42 (14 participants) each covered 18.1 kms in July and contributed the combined distance to the World Walk project.
 
Kim Lachut from the UConn Sharing Hope walk reported that their 250 walkers in June raised $20,000 for the American Brain Tumor Association.
 
Steve Andrews, President of the SE Brain Tumor Foundation in Atlanta reports that a message from the IBTA was read to their several thousand participants.
 
Trudy Thomas from BTUK advised that walkers in the Jurassic 32 fund-raising walk donated 343 miles to the World Walk target.
 
Thank you for your continuing support.
 
Denis Strangman (Chair)                                     
International Brain Tumour Alliance IBTA 
www.theibta.org

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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