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IBTA E-News May 24 2009

Posted on: 05/24/2009

IBTA E-News May 24 2009
Dear Friend of the international brain tumour community

If you are experiencing difficulty in viewing this Newsletter click here for a web version.
First glioma operation booklet: The 62-page booklet about the “First Modern Day Documented Brain Tumour Surgery for a Glioma”, written by IBTA co-directors Kathy Oliver and Denis Strangman, has been published and was launched at the WFNO meeting in Japan. Individual copies are available from the IBTA website ( for the equivalent of 5 GBP (about $7 USD), which covers postage and packing, payable via the PayPal facility using a credit card.
Bulk copies are available (depending on remaining supplies) for distribution at neuro-related scientific and patient conferences. We only seek reimbursement of the cost of freighting the booklet from the UK to your location, where that is possible. 300 copies were distributed at the WFNO meeting and 500 copies have been shipped to Orlando for distribution at the ASCO meeting (see later). Copies have also been shipped or earmarked for distribution at forthcoming European, Asian and USA scientific conferences.
The IBTA recently attended the 3rd Quadrennial Meeting of the World Federation of Neuro-Oncology (WFNO) and the 6th Meeting of the Asian Society for Neuro-Oncology (ASNO) at Yokohama, Japan, where it had a display and was assisted by colleagues from the Japan Brain Tumour Alliance. A brief report of the Conference may be accessed here. The IBTA was established at the 2nd WFNO meeting in Edinburgh in 2005 and it was pleasing to meet with a number of people who had been at the Edinburgh foundation meeting.
The IBTA will also be participating at the British Neuro-Oncology Society (BNOS) conference on 24 - 26 June 2009 in Kingston-upon-Hull, UK; the Joint ECCO 15- 34th ESMO Multidisciplinary Congress (European CanCer Organisation and European Society for Medical Oncology) in Berlin from 20 - 24 September; and the EPPOSI (European Platform for Patients' Organisations, Science and Industry) 10th Workshop on Partnering for Rare Diseases Therapy Development in Brussels from 26 - 27 October.
CNS guidelines: The US National Comprehensive Cancer Network (NCCN) on 18 May released revised guidelines for CNS tumours. You can read a brief item about them at this NCCN webpage. However, to view a complete copy of the 81-page document you need to register (which is free) at this webpage. The guidelines are protected from copying but may be printed. A distinguished panel of brain tumor specialists contributed to their drafting.
TV commercial for brain tumour awareness: Klaske Hofstee, of the Netherlands brain tumour patient and caregiver support group, reports to the IBTA that her organisation has made a commercial for Dutch national television to raise awareness of the challenges of brain tumours. The commercial was broadcast during March and April this year.  To view the commercial, see /    There is also a film about the making of the commercial. 
Klaske wrote: "The actors in the TV commercial are my husband Nico (brain tumor patient, in the blue suit with the red blouse) and college, friends, and other brain tumor sympathisants, having a close relative with a brain tumor (brother, mother, friend). I worked 60 hours a week for two months and organized the script, the people, the location, the material even the food on the set, and all free tv-channels.  There were... 40 people busy with the commercial on the filming day."  Many congratulations to Klaske on this innovative and wonderful awareness raising effort!  Please do visit's the link above to view the commercial.
ASCO: The IBTA will have a booth at the forthcoming meeting of the American Society of  Clinical Oncology conference in Orlando (29 May – 2 June). We have been accepted for a place (Booth No 1901) in the general patient advocacy combined display which houses about 20 cancer patient advocacy groups. If you are participating at ASCO please call by and introduce yourself. Meanwhile, you can download a PDF file of the abstracts for the CNS stream from this ASCO webpage.
Cancer World article: IBTA Chair Denis Strangman has been quoted about the unique nature of a brain tumour diagnosis in a comprehensive article about health rationing in Europe in the May-June issue of Cancer World, which is published by the European School of Oncology. The seven-page article can be downloaded from here .

 Lithuanian brain tumour patient advocate Ingrida Blazyte Byciuviene passed away on 1 May, the day after her 30th birthday. Ingrida was the founder of kartu lengviau, an Internet website and support group for brain tumour patients. The IBTA has uploaded a tribute to Ingrida at this webpage and which contains these moving words from her: “I never blamed anyone and anything for my illness. Opposite, I’m grateful for it as it made me think a lot and changed me completely…I felt that I was seeking for some untrue values, sometimes I was angry with people for nothing, I used to judge them for one or another deed, while now I am a totally different person.”
EORTC and patient representative involvement: The IBTA wrote recently to the brain tumour sub-group of the European Organisation for Research and Treatment of Cancer (EORTC) seeking patient involvement in the development of EORTC sponsored clinical trial protocols. The request was discussed at the Executive Committee of EORTC.
The Director-General, Dr Francoise Meunier, has written to the IBTA to say that it is not possible to place particular patient representatives into a particular committee but it will “associate” patient representatives with the Annual Groups Meetings and the EORTC strategy meetings and the IBTA will be advised of and invited to these meetings. This is a significant decision and we look forward to the time when brain tumour patient representatives are invited to attend similar clinical trial meetings organised at the country level which already occurs in some instances but not always.
Clinical Nurse Coordinator: Dr Ibrahim Quaddoumi, who attended the founding meeting of the IBTA in 2005, was then located at Jordan but is now at St Jude Children’s Research Hospital, Texas. He is a co-author of an interesting article about the appointment of the first clinical nurse coordinator in the paediatric neuro oncology section of the King Hussein Cancer Centre, Jordan. A copy of the article can be accessed here.
On May 15, the IBTA attended a deliberative event in London on "Deciding the value of cancer treatments".  This workshop focussed on the questions posed by the (UK) Kennedy Review into Valuing Innovation and covered such topics as:  what are the characteristics of good treatment; how should we take account of the fact that the introduction of new cancer treatments often takes place towards the end of life; what is meant by ‘innovation’; and what distinguishes innovation from other concepts such as high quality'?  A 12-page Word document report of the meeting can be downloaded from here.
The RARECARE project, co-funded by the European Commission, is estimating the burden of rare cancers in Europe and aiming to provide an operational definition of "rare cancer" and a list of cancers which meet that definition.  The IBTA will attend a meeting for the RARECARE project in Treviso, Italy on 10 June 2009 to which stakeholders have been invited prior to the list being submitted to the European Commission.  See
Walk Around the World For Brain Tumours (1 January – 7 November 2009) and the International Brain Tumour Awareness Week (1-7 November): These two projects are progressing steadily and gaining new support. Please advise us of any activities planned or already held so that we may upload them to the IBTA website.
We would appreciate permission to list your group or institution as a supporting organisation, if you have not already advised us to that effect. We would also appreciate your mention of the IBTA projects on your website with a link back to the IBTA website. At WFNO the IBTA was told of a new donor contact prompted by an awareness walk that was held by an organisation in an Asian country. This has resulted in initial funding within a hospital with plans for on-going financial support in the brain tumour area from an individual who observed the walk taking place.
Thank you for your continuing support.
Denis Strangman (Chair and Co-Director)                                     
International Brain Tumour Alliance IBTA

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 Co-Director’s address above, not to the registered office.
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