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The International Brain Tumour Alliance Newsletter


Posted on: 07/12/2008

Dear friend of the international brain tumour community
 
The IBTA was invited to address the Second Parliamentary Summit on Rarer Cancers held in London on 19th June.  A copy of Kathy Oliver's presentation is available here. This is a link to Kathy’s presentation at the European Cancer Patient Summit held in Brussels earlier in 2008.
 
Graphic designer Edwina Kelly (UK) has been working very hard on the layout of a 92 page book commemorating the IBTA' s 2007 Walk Around the World for Brain Tumours and the International Brain Tumour Awareness Week. Edwina just managed to complete the layout before the arrival of her first baby Oscar and has now turned her attention to layettes! The book will be printed in both the UK and Australia and a copy will be sent to all 2007 and 2008 supporting organisations. Free copies are available for brain tumour treatment centres and support groups. Please contact chair@theibta.org
 
There are now 140 brain tumour specific and cancer related organisations worldwide which support the IBTA's two awareness-raising projects of the Walk Around the World for Brain Tumours and the International Brain Tumour Awareness Week (26 October - 1 November 2008) – see latest list on the IBTA website at www.theibta.org

The IBTA has suggested to the International Union Against Cancer (UICC) the addition of the following words to its draft World Cancer Declaration 2008, intended for adoption at the World Cancer Congress in Geneva in August: “There are a number of cancers for which there are currently no effective prevention or screening strategies or curative therapies.  They are often the less common and rare cancers and require an urgent focus of attention on developing better treatments.” Our intention is to provide a greater balance within the emphasis and priorities enunciated in the Declaration.
 
IBTA Chair Denis Strangman was invited to contribute an article based around Senator Kennedy’s diagnosis of a brain tumour, which appeared in the June 2008 issue of “Cancer Nursing Practice” in the UK.
 
The Australian Genomics and Clinical Outcomes of High Grade Glioma (AGOG) website has been launched. Denis Strangman is a health consumer member on the AGOG committee.
 
IBTA advisor Sally Payne (Sydney, Australia) looked after an exhibition booth for the IBTA, with the help of brain tumour patient and caregiver Seamus and Eileen Feely, at the annual American Society of Clinical Oncology (ASCO) scientific conference held in Chicago in June. Sally’s overview of the CNS presentations can be accessed here. A number of oncologists attending the conference collected a copy of the IBTA handout on pseudo-progression, which IBTA advisor Chris Tse researched.
 
Naomi Berkowitz, who has been Executive Director of the American Brain Tumour Association since 1989, retired on 30 June. Naomi has been supportive of the IBTA, particularly at the time of its formation, and we wish her well. Naomi’s career background has been summarised here. Naomi will be succeeded by Elizabeth Wilson.
 
The IBTA will have a presence at the following conferences to be held in the coming months: European Association for NeuroOncology (EANO); UICC 2008 World Cancer Congress; Brain Tumour UK; Rare Cancers in Europe: Challenges and Solutions; Society for Neuro-Oncology (SNO).
 
In the absence of any inside knowledge this article in the International Herald Tribune appears to be a good summary of where the international mobile phone study is at.
 
Many groups have 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). Here are some examples.
 
A walk organised by the Ed Evans Foundation for Brain Tumour UK (BTUK) took place on Easter Monday, 24th March in Glamorgan, Wales (UK). Two hundred and twenty eager walkers together with a wide selection of dogs gathered at the Plough & Harrow, Monknash. A total of 1725 miles was donated to the Walk Around the World for Brain Tumours. 
 
Shannon Bradbury of Queensland held another walk (climb) up Mount Warning on 1 March and he and his friends contributed 52.8 kms to the World Walk total.
 
The Andrew McCartney Trust Fund for Brain Tumour Research held its first charity walk on 1st June at the beautiful Lake Vyrnwy, Powys in Wales, (UK). Organiser Charles Grant reports that between 40 and 45 people walked to raise funds for brain tumour research.

Bev Barnett (Australia) and friends travelled to the UK for a challenging walk through the borderlands of England and Wales along an ancient earthwork called Offa's Dyke for 285 kms and have donated their combined total to the World Walk target.

The 15th Annual Angels Among Us 5K and Family Fun Walk was held on 26th April at Duke University (USA). Organiser Ron Brinton reported that 3,200 people in the Fun Walk walked an average of 1.5 miles for a total of 4,800 miles. Between the walkers and runners at the event a record, all-time high of $1,145,911.70 was raised for the Preston Robert Tisch Brain Tumor Center at Duke for use in research and compassionate care of brain tumour patients.
 
Hilary Davies got a team together for the Bridgnorth Walk (UK) on 26th May.  Those over 40 could walk a 20 mile route and those under could walk a 22 mile route.  This was for BTUK.
 
The 5th Annual Glio-Blastoff 5K event in memory of Denise Kimball took place in the USA on Saturday, 10th May and raised over $11,500.00 for brain tumor research. From among 350 participants a total of 163 people each walked 3.1 miles, which equates to 505.3 miles toward the IBTA's Walk Around the World for Brain Tumours' target.
 
Organisers of the 4th Annual Jeffrey Thomas Hayden Foundation 5K Family Walk which took place in West Chester, Ohio (USA) on 10th May, 2008 reported that they raised nearly $15,000 to support the Foundation's mission. JTHF very kindly agreed to donate the mileage from their 250 walkers and we are most grateful for their contribution of 735 miles.

The Arizona, USA-based Students Supporting Brain Tumor Research (SSBTR) informed us that their Walkathon this year was extremely successful.  They raised over $230,000 and had at least 4000 people participating.
 
Maria Robinson organised a walk in Pugney's Country Park near Wakefield on 11th May, for BTUK, which she named 'Step Forward for Brain Tumour UK'.
 
Kathryn Geyer of Team John Geyer (USA), which took part in a Relay for Life reported that she made up a flyer explaining the Walk around the World and asked other teams to also donate their mileage to the World Walk. She included a gray ribbon for people to wear in support of those affected by brain tumors.  Team John Geyer's grand total walked was an amazing 888 miles. The team raised $3200 for the American Cancer Society.
 
Organisers of the Levi's Star walk on 15th March in Wakefield (UK) let us know that 115 adults and children plus five dogs took part.  Levi's Star kindly donated 360 miles to the World Walk target.
 
Cindy Rosser, Support Liaison for the Michael Quinlan Brain Tumor Foundation in Louisville, Kentucky (USA), reported a fantastic 1,395 miles for the World Walk were achieved during the Foundation's May 10th walk in which 450 people participated.  The Walk raised $56,000.  A VIP reception and David M Bailey concert were held the night before the Walk.
 
The 7th Annual Kevin J Mullin 5K Run/Walk organised by the Kevin J. Mullin Memorial Fund for Brain Tumor Research (Lancaster, Ohio, USA) was held on Sunday, 20th April and saw 450 participants walking and donating a brilliant total of 2,205 kms to the Walk Around the World for Brain Tumours.  Organiser Cecilia Mullin reported that the weather was perfect, there was a great turnout and $24,000 was raised for brain tumour research and awareness.

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.
 
Note: This e-mail has been sent to hidden e-mail addresses to protect personal information. If you do not know why you have been sent it, or would prefer not to receive such e-mails in the future, please contact: chair@theibta.org
 


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