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IBTA (International Brain Tumor Alliance) E-News


Posted on: 02/15/2009

IBTA E-News 16 February 2009
 
Please note: the links to websites mentioned in this Newsletter are provided in the News area of the IBTA website (www.theibta.org) When we try to include them in the body of the E-News they tend to trigger filter devices for detecting spam email, which this E-News is not.
 
Dear international brain tumour contact
 
World cancer leader calls for wider public understanding of brain tumours: Many thanks to the 100 specialists and 60 brain tumour patient groups who supported our moves for greater recognition of childhood brain tumours. Their names and positions have been listed on the news section of the IBTA website. As a result, the International Union Against Cancer (UICC) suggested that the IBTA and the UICC issue a joint media release on the occasion of International Childhood Cancer Day (15 February). A copy of that statement can be downloaded from the website news section.
 
In that media release the Executive Director of the UICC, Ms Isabel Mortara, states: “There is a real need to promote a wider public understanding of the challenges faced by brain tumour patients, their families and their caregivers”. We are grateful for this support and recognition, and hope that the more than 300 member organisations of the UICC will adopt a similar response.
 
In undertaking research for the statement the IBTA asked the US cancer statistics body, SEER, to provide statistics for childhood brain tumour mortality compared with all leukaemias. SEER figures verify that for the latest available year (2005) mortality for childhood (0-14) brain tumours in the USA now exceeds that for all leukaemias. We have identified similar statistics for the UK and Canada.
 
Conferences: The IBTA will have a display booth at the combined EORTC/EANO meeting on Trends in Central Nervous System Malignancies at Budapest during 27-28 March 2009 where we look forward to meeting old and new acquaintances.
 
The IBTA will also have a booth within the Patient Advocacy area of the ASCO Conference to be held in Florida during 29 May – 2 June. This will be the first time that the IBTA has been selected for a presence in this area, having previously been required to obtain a booth in the commercial area.
 
The IBTA will also be attending the World Federation of Neuro Oncology (WFNO) Conference in Japan during11-14 May where IBTA co-director Kathy Oliver has been invited to speak at a parallel patients’ conference.
 
Organisations wishing us to display small quantities of patient and caregiver-relevant brochures on our table at these conferences should contact Kathy Oliver (email address below).
 
Sir Rickman Godlee: A feature of the 3rd Annual International Brain Tumour Awareness Week, to be held during 1-7 November 2009, will be a commemoration of the 125th anniversary of the first modern day documented operation to remove a glioma brain tumour which Sir Rickman Godlee performed in the UK on 25 November 1884. We have undertaken extensive research in the UK, with a view to printing a small booklet and making it available for free distribution at appropriate brain tumour scientific conferences (depending on the results of our current funding appeal to companies and foundations) and to patient groups. The anniversary represents a wonderful opportunity for joint activity by oncologists and neurosurgeons who specialise in brain tumours.
 
Meanwhile, brain tumour awareness and fund raising walks associated with the 3rd Walk Around the World for Brain Tumours have already commenced. Our target this year is five times around the world at the Equator (200,000 kms).Organisations who wish to be listed on our website and in printed material as supporting these projects should contact the Chair (email addresses below). The two projects were supported by 157 cancer and brain tumour-specific groups worldwide in 2008 (see the IBTA homepage).
 
Rare or less common cancers: The "Rarecare" project (a European Commission funded initiative) has been constructing a table of rare cancers which aims to be the definitive list.  This list, and the rationale behind selection, have now been uploaded to the Internet (see News section of IBTA website). The table contains brain tumours.  Feedback is invited and if anyone has any comments, these can be sent to Gemma Gatta, the project coordinator in Milan. The IBTA has already sent some feedback to the secretariat.
 
Thomas J Tucker: The IBTA was sorry to learn that Canadian Thomas J Tucker passed away on 4 January. Tom had a brain tumour and was determined to undertake Ironman races in three continents (including Australia and the USA) to raise funds for brain tumour research, which he did very successfully. He consulted with our Chair about possible recipient organisations and was a strong supporter of the concept of the Walk Around the World for Brain Tumours. We were also sad to learn of the death of Penny Wilson-Webb on 18 December who was Chief Executive of the UK Rarer Cancers Forum.
 
Low and middle income country project: Our work in this area continues at a slow pace with some difficulty in obtaining suitable “pen pictures” of the typical standard of care available to brain tumour patients in a range of countries covering most continents. Professor Jonathan Finlay of Los Angeles recently gave a presentation on this general subject to a St Jude International Outreach Program Seminar and has allowed us to upload his power point slides as a PDF (see IBTA website).
 
Virtual Brain Tumour Board (VBTB): Katie Rapp from Methodist Healthcare advises: “In March, we will launch the new VBTB website that will feature our new format.  Where we previously provided a series of hour-long Live Webcasts of neuro-oncology case discussions, this year we have edited all of that content down into shorter, easier-to-digest segments that make up our huge video library.  Now, each case will be its own video, searchable in our index by tumor type (pituitary tumors, for example).  Additionally, we will continue to film our Brain Tumor Board and will release a new case discussion video each week, to which individuals (physicians and patients) may subscribe based on interest level (spinal tumors only, for example).”
 
Methodist Healthcare responded positively to a request from the IBTA during the VBTB formative stage that patients be permitted to observe the Board’s proceedings (where all patients’ names are suppressed). Professional groups are increasingly realising that there is a group of patients and their caregivers who wish to become knowledgeable about current treatment discussions and emerging therapies.
 
IBTA website and conferences: An analysis of our website statistics indicates that among the most popular webpages are those which list future scientific and patient conferences of interest to the brain tumour community. Please inform us of the details of these conferences in your area and we will incorporate them in the lists, even if they are basically intended for a national or regional audience.
 
Thank you for your continuing support.
 
Denis Strangman (Chair)                                     
International Brain Tumour Alliance IBTA 
www.theibta.org

Kathy Oliver (Co-Director)
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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