IBTA E-NEWSLETTER 19
AUGUST 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
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
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
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
BTUK Patient Conference: A presentation by IBTA Secretary Kathy Oliver
to the
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,
IBTA awareness-raising book: The 92-page book published by the IBTA in
the
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
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
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
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
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
Peter Bennett from Brisbane, Australia, advised that on the same weekend
racewalkers in
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,
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