IBTA E-Newsletter

15 October 2008

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 USA and met with surgeons in that country. This will provide an opportunity to raise awareness about brain tumours and to encourage partnerships between the oncologists, neurologists, and the surgeons, in commemorating this anniversary. We will therefore move the 2009 International Brain Tumour Awareness Week into November, to be closer to this anniversary, and will be sending you an on-line poll to obtain your views about an appropriate date range for the Week. Please respond to this brief survey when it arrives.
 
Canadian worldwide initiative: Katja Viventsova, an environmental scientist and artist (her artwork may be accessed here), and her partner Mike Ferguson from Canada, have come up with a novel way of gathering miles for the World Walk. They have contacted their friends, colleagues and relatives around the world to undertake their own walks (by themselves or with friends), at least one kilometre in length, by the end of the Awareness Week (1 November). They are hoping to prompt walks in a wide range of locations and countries. Katja has been fighting brain tumours (GBM) since April 2007. She has had three brain surgeries, and has received several types of treatments. Her tumours are currently stable with Avastin and Irrinotecan treatments every two weeks. What a wonderful display of international solidarity this initiative will be!
 
Pedometers: Another novel initiative has come from neuroscience nurses in Sydney, Australia, who will each wear a pedometer during the Awareness Week and be individually sponsored for the miles they walk around the ward during working hours. A listing of forthcoming awareness-raising events (not just walks) can be viewed here.
 
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 Las Vegas in November. Please make yourself known to our representative.
 
Brazil: Thank you to those who responded to our inquiry on behalf of a sociologist who wished to undertake research in Brazil. Your names have been forwarded to our contact.
 
"Rare Tumours in Europe - Challenges and Solutions": Brain tumours are regarded as a "rare" or "less common" cancer. This forthcoming conference, which has involved input from patient group representatives including the IBTA secretary working with the European Cancer Patient Coalition (ECPC) of which the IBTA is a member, is scheduled for Thursday, 6th November in Brussels and will bring together high-level speakers and delegates from all over the European Union. Ella Pybus (Co-Director of Meningioma UK and a Trustee of Brain Tumour UK) will be one of the breakout workshop panelists. The conference will identify and debate barriers to the effective treatment of rare tumours, such as brain tumours, and will investigate possible solutions.  This conference is organised by the European Society for Medical Oncology (ESMO).  Contact: longo.francesca@esmo.org for further details of registration and the meeting.
 
David M Bailey tour: David M Bailey, the American singer/songwriter (and long term brain tumour survivor) arrives in the United Kingdom on Saturday, 25 October to kick off the International Brain Tumour Awareness Week in Britain with a series of unique concerts for a number of leading brain tumour groups. 
 
Concerts will take place throughout the week at various locations including Amersham, Buckinghamshire (Brain Tumour UK); Hartley Wintney, Hampshire (Samantha Dickson Brain Tumour Trust) and Chandlers Ford, Hampshire (Brainstrust).  Also in the pipeline are media interviews and a possible visit to the Isle of Wight. 
 
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 US brain tumour patient and advocate Steve Coffman who was a supporter of the IBTAs projects. Our condolences are extended, may he rest in peace.
 
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 (UK) report that 43 walkers strolled around Lake Vrnwy in Wales, raising over 5,000 GBP and clocking up 546 miles which will be applied to the World Walk total.

The American Brain Tumor Association (ABTA) has pledged the mileage from its Montrose Harbor, Chicago Path to Progress run/walk held in April. This event saw some 5,500 participants and 250 volunteers helping to raise more than half a million dollars for brain tumor research. 

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 New South Wales (Australia) completed a walk through the borderlands of England and Wales along an ancient earthwork called Offa's Dyke.  The journey took three weeks, with five rest days. The total distance of 2400 kms has been donated to the Walk Around the World for Brain Tumours.  An associated group of walkers clocked up 1995 kilometres, for a grand total of 4395 kms.
 
Andrea's Gift (the Yorkshire-based UK brain tumour organisation) has amassed an amazing 2,363 kms - from four sponsored walks held this year - which Andrea's Gift is donating to the Walk Around the World for Brain Tumours.  Carol Robertson of the charity reports that many families of brain tumour patients participated, including those which had lost loved ones to the disease.

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 Queensland (Australia) United Brain Tumour Support group have contributed 450 kms from a 10 kms beach walk undertaken on 20 July. The funds raised were donated to the Cancer Council Queensland.

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 Peoria, Illinois, USA with hundreds of walkers taking part. Penny Flannigan advises that the runners and walkers hope to raise $45,000 for the American Brain Tumor Association.

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 Hampton Primary School (Victoria, Australia) walked a total of 2965 kms to raise awareness for brain tumours. This was longer than the distance between their home city of Melbourne, Australia, and Wellington in New Zealand (2594 kms).

The National Hospital Development Foundation, the charity dedicated to raising funds for the (UK) National Hospital for Neurology and Neurosurgery, and two other UCL charities, organised a six mile walk across six London bridges on 21 September, with 70 walkers contributing 420 miles to the World Walk total.

Two people well known in Canadian brain tumour support organisations, Rosie Cashman (British Columbia) and Maureen Daniels (Toronto) hiked Gros Morne and have donated the distance to the World Walk.

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 7^th Annual Picnic and Walk Around the Lake (at Lake Tomahawk), organised by the (USA) West North Carolina Brain Tumor Support group on 18 September has been donated to the World Walk target.

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 (USA) participated in the American Cancer Societys Relay for Life, raised $3,200 for the ACS and achieved a grand total of 888 miles for the Walk Around the World for Brain Tumours.