IBTA E-NEWSLETTER 15 October 2008
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Dear Friend of the international brain tumour community
It is only a few days to the International Brain Tumour Awareness Week (26
October to 1 November), with many awareness-raising events scheduled to be held
in different countries. Have you organised an activity (walk, seminar, picnic,
open day, hospital entrance display)? If so, please let us know (chair@theibta.org) and we will list it on
the IBTA website.
Posters: Posters with our main message for this years awareness aims are
available for download and printing from here. They are available in the
following languages: English - A4 version, English - A3 version
(Preferable, if you have a printer capable of printing A3 size), French, German, Spanish, Catalan, Italian, Chinese, (the Chinese
poster is still being finalised) Japanese, Russian, Thai, Turkish, Urdu
We are greatly indebted to a busy Canadian neuro-oncologist
who has a very multi-cultural practice and prevailed upon his contacts to
translate the content into their native languages. Could those with language
skills please check our existing translations and provide us with the
appropriate words for other major languages that might be missing?
2009: With holiday decorations already appearing in shopping centres it is
time to start planning for 2009. November 2009 will represent the 125th
anniversary of what is regarded as the first modern-day brain tumour surgery,
which was undertaken by Sir Rickman Godlee in
London (UK). He later travelled to the
Canadian worldwide initiative: Katja Viventsova, an environmental scientist and artist (her
artwork may be accessed here), and her
partner Mike Ferguson from
Pedometers: Another novel initiative has come from neuroscience nurses
in
Targeted therapies: The IBTA, in association with Meningioma UK and The
United Brain Tumour Campaign (UBTC), which represents twelve brain tumour
charities in the UK, has made a joint submission (available here) to a UK inquiry into
genetic research policies, recommending that patients who request it be given
access to any of their own genetic information identified as a result of
donating tumour or blood samples for research. With the emergence of a number
of targeted therapies this information could assist patients to access
therapies which might be relevant to the molecular characteristics of their
tumour.
The (US) National Childhood Brain Tumor Prevention
Network Act of 2008: US brain tumour activist Lloyd Morgan is advocating
for support for this legislation in the US Congress. Though childhood brain tumors are the leading cause of solid cancer death in
children, almost nothing is known about their causes.
This Act, when passed into law, mandates the largest, most comprehensive
childhood brain tumor study ever undertaken.
Using common questionnaires and laboratory procedures, across multiple
consortia, the goal of the study will be to find the causes of this dreadful
disease. It will investigate the childs
environment, nutrition, genetics, epi-genetics,
clinical and radiological data. The majority of US childhood brain tumors cases over a 5-year period are expected to be in the
study. Lloyd may be contacted at: bilovsky@aol.com
Society for Neuro Oncology (SNO): The IBTA is planning on attending the
annual scientific conference of SNO in
"Rare Tumours in
David M Bailey tour: David M Bailey, the American singer/songwriter (and
long term brain tumour survivor) arrives in the
Concerts will take place throughout the week at various locations including
Amersham, Buckinghamshire (Brain Tumour
From the UK, David will then travel to Sweden for a concert in Gothenburg on
1st November, being organized by Svenska
Hjarntumorforeningen (the Swedish brain tumour group) and then afterwards
he will visit Copenhagen for concerts to raise awareness of brain tumours in
Denmark, and in connection with the promotion of a new brain tumour group in
that country, hjernetumor.dk
(Brain Tumour Denmark). For further information, please contact Kathy
Oliver, IBTA Secretary at kathy@theibta.org
or the individual organizations mentioned, which are hyperlinked above.
Steve Coffman: We note with sadness the passing of
Embroidery thread: The concomitant therapy of temozolomide
and radiation usually takes six weeks. Here is an idea for family and friends
whose loved one is undergoing this treatment. To show your solidarity agree to
wear around your wrist a thin plait of embroiderers threads for the duration of
the treatment and then at the end of the six weeks come together and cut the
threads from your wrist symbolising the end of that part of the treatment. We
are indebted to a breast cancer advocate who thought of this idea for breast
cancer patients and their friends. She also calls on her participants to donate
to breast cancer research. We offer this concept to brain tumour research and
support groups who may wish to promote it.
Standard of care: We plan to send an on-line survey to our patient and
caregiver contacts to identify gaps in the treatment options available to them.
Please respond, the information obtained will be de-identified.
Walks already held: As promised, we now report on a number of
awareness-raising walks that have already been held and of which we are aware.
If your walk does not appear here or in previous issues of our E-News
(available on the IBTA website), or on our website listing,
please notify the Chair. Our target
is three times around the world at the Equator (120,000 kms
or 75,000 miles) The cumulative total to date is: 84,439 kms
by 17,797 people who have raised $2.054 m (USD) for various brain tumour
research and support organisations (at our request, none of the funds raised
goes to the IBTA). The target is achievable, lets race for the finish line!
Ashlie Sembrot of Amy's Walk,
which took place in Philadelphia (Pennsylvania, USA) in memory of Amy Masiejczyk (Ashlie's Aunt),
attracted 50 walkers, walking 5 miles each, for a total of 250 miles.
Charles and Olga Grant of the Andrew McCartney Trust Fund for Brain Tumour
Research (
The American Brain Tumor Association (ABTA)
has pledged the mileage from its
Stephanie Beckedorff reports that the Barbara DiStase Memorial Walk, held in August, had a total of
103 people participating. This group has donated 159.65 miles to the IBTA's Walk Around the World for
Brain Tumours. Funds raised went to the American Brain Tumor Association.
Beverly Barnett and Friends of the Bush Club of
Andrea's Gift (the Yorkshire-based
Ron Brinton estimated that 3,200 walkers walked an average of 1.5 miles at the 2008
Angels Among Us event at Duke (USA) for a total of
4,800 miles. The walkers and runners raised a record $1,145,911.70.
Shannon Bradbury and friends from the
Sue Evans, proud mother of the late Ed Evans, reported that 1725 miles
were walked on Easter Monday in Marcross and Colwinston (UK) by 220 walkers who hope to raise over 3,000 GBP.
The 6th Annual Mark Linder Walk for The Mind was
held in
Thomas Lind Mainz of hjernetumor.dk organised Team Hjernetumor
(brain tumour) for a Stafet for Life in September
under the Danish Cancer Society. The Team had a walker continuing during the
night for 24 hours.
Kristen Gillette from New Jersey (USA) advised that 358 participants covered a
total of 716 miles on Sunday 7 September for Kortneys
Challenge.
On 4 September Tara Gent advised that 487 children at
The National Hospital Development Foundation, the charity dedicated to
raising funds for the (
Two people well known in Canadian brain tumour support organisations, Rosie Cashman (
Mandy Lou Patton reported that their team called Brads Buddies (her
brother in law Brad Forest Schmidt passed away last year from a brain tumour)
covered a total of 150 miles in the local Relay for Life on 1 August and raised
over $16,000.
For reasons beyond their control the Zimbabwe Brain Tumour Association
was not able to hold a walk this year, but raised awareness of brain tumours at
a golf day in April and will organise an indoor brain tumour awareness
display.
Christine Forecast, working with the SDBTT Astro
Fund for low grade gliomas (UK), let us know that pupils at Greshams School in Holt, Norfolk, did a sponsored walk
around their playground recently and raised over 7,000 GBP. Their mileage
will be donated to the World Walk.
George Plym (long term brain tumour survivor) advises
that the mileage from the 7th Annual Picnic and Walk Around the Lake (at
The 5th Annual Glio-Blastoff 5K held at Eastern
Michigan University (USA) was a great success. Over $11,500.00 was raised
for brain tumor research by over 350
participants. Meghan Kathleen Kimball advises that there was a total of
163 walkers and each of them walked around 3.1
miles, which equates to 505.3 miles toward the IBTA goal.
The Jeffrey Thomas Hayden Foundation 5K Family Fun Walk took place on
May 10, 2008 and mileage from the walk has been donated to the Walk Around the World for Brain Tumours.
The Kelly Heinz-Grundner Foundation based in
Delaware (USA) held its first "GetYourHeadInTheGame" brain tumor
awareness walk on Saturday, 3 May, and donated the mileage to the Walk Around
the World for Brain Tumours.
Cecelia Mullin advises that 450 participants completed the 7th Annual Kevin
Mullin 5K Run/Walk on April 20th and contributed 2,250 kms
to the World Walk total while raising $24,000.
Elizabeth Becker of Meagans Walk Creating a
Circle of Hope (Toronto, Canada) advises that a conservative estimate of
the number of participants was 2500 - all would have walked a 5 kilometre
route, so that is 12,500 kilometres pledged for the Walk Around the World
target.
Students Supporting Brain Tumor Research (SSBTR)
based in Phoenix, Arizona (USA) raised over $230,000 and had at least 4000 participants
in its event held earlier in 2008. The event lasted for three hours and
20,000 miles was achieved and donated to the Walk Around
the World for Brain Tumours.
The Michael Quinlan Brain Tumor Foundation
advised that approximately 450 participants (up from 250 last year)
accumulated 1,395 miles for the Walk Around the World for Brain Tumours on 10
May and raised $56,000.
Kathryn Geyer writes that Team John Geyer (
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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