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IBTA Newsletter


Posted on: 05/28/2008

Dear Friend of the international brain tumour community

If you are experiencing difficulty in viewing this Newsletter click here for a web version.

Much is happening in the world of brain tumours.

Senator Ted Kennedy's unfortunate diagnosis of a malignant brain tumour has placed the spotlight on brain tumours. On hearing the news the IBTA released a statement to the international media. A copy is available for download from here.

The IBTA will have an exhibition booth (booth number 2020 in the patient advocacy area) at the American Society of Clinical Oncology (ASCO) conference at Chicago during 30 May - 3 June. A list of conference abstracts relating to CNS tumours is available here. The location of the IBTA booth and other brain tumour advocacy booths can be viewed here. IBTA supporters Sally Payne (Australia) and Eileen and Seamus Feely (Chicago) will be pleased to welcome visitors to our booth.

There are now 136 brain tumour specific and cancer related organisations worldwide who 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) – see latest list on the IBTA website. A number of walks have already been held and the mileage from the walkers donated to the target of three times around the world, with funds raised going to local and national brain tumour charities for support or research. We plan to print and distribute copies of a book commemorating events held during 2007 as part of these annual activities. We hope that brain tumour patients perusing the book in doctors' waiting rooms will realise that they are not alone and that there are people just like them from countries all over the world.

IBTA Secretary Kathy Oliver has prepared a report on her attendance at the IV International Conference on Future Trends in the Treatment of Brain Tumors held at
Bologna (Italy) 22-23 February and her report is available here.

A story about Swiss journalist Eric Baumann and his brain tumour has been printed in the latest issue of Cancer World and can be accessed here. Kathy Oliver and Denis Strangman met Eric at the European Cancer Patient Coalition (ECPC) meeting held at Brussels in April. Members of the Belgian brain tumour support group Werkgroep Hersentumoren also attended the meeting. Kathy Oliver recently represented the ECPC at a planning meeting in Brussels for  a rare tumours conference to be held later this year. Here is a link to an article about brain tumours written by Kathy which was published in the Parliament Magazine which was distributed to all members of the European Parliament. Again in Europe, we have been pleased to establish contact with a new brain tumour support group Kartu lengviau in Lithuania organised by Ingrida Blazyte-Byciuviene. 
 
We have been communicating with Methodist University Hospital in Memphis, Tennessee, to obtain international patient and caregiver observer access to its proposed Virtual Brain Tumor Board due to commence on 2 July and intended for worldwide viewing by doctors. Access will be available via a "non-physician" button on the sign-up menu. The project has been described in the following words: "Virtual Brain Tumor Board (VBTB) is a live Webcast series where a multi-disciplinary panel of experts gather to review difficult and unusual neuro-oncology cases.  VBTB focuses on leading-edge treatments for brain tumors ...". It could be extremely useful for interested patients, caregivers, and brain tumour advocates.

The IBTA has been accepted as an associate member of the International Union Against Cancer (UICC) and intends to have a display panel and presence at the World Cancer Congress to be held in Geneva during 27-31 August. We will also seek to establish contact at the Congress with cancer control representatives from the low and middle income countries to identify the standard of care available to brain tumour patients. This will be part of our forthcoming survey of the standard of care in developed and developing countries.

The IBTA has recently prepared for ASCO and also distributed to the English language brain tumour patient and caregiver discussion lists a memorandum about the phenomenon of pseudo progression experienced by some patients undergoing treatment with the concomitant therapy of temozolomide (Temodar/Temodal) and radiotherapy . It can be downloaded from here.

We have produced a colourful poster which can be used by local groups to encourage school children to participate in the Walk Around the World for Brain Tumours. It can be downloaded in PDF format from here.

The IBTA has been communicating with leaders of the EORTC Brain Tumour Group with a view to providing a process for patient input to aspects of clinical trials and has recently sent an email to relevant brain tumour patient groups about this. We are also interested in looking at patient consent forms used when tumour tissue samples are kept for research purposes, also known as "Biobanking". Please contact the IBTA Chair (chair@theibta.org) on this matter.

PDFs of the lecturers’ power point presentations made at the Perspectives in Central Nervous System Malignancies 4 conference held in
Berlin in March can be downloaded from this website. The IBTA attended this conference and also had a display booth visited by many conference participants. 
 
The IBTA Chair attended and made a short presentation at the annual meeting of the Brain Tumour Epidemiology Consortium (BTEC) held at the Deutsches Krebsforschungszentrum (German Cancer Research Center), in Heidelberg, in April and spoke at a seminar attended by 106 neuroscience nurses held at St George Hospital, Sydney, Australia, on 18 April. The IBTA also displayed a poster at the 3rd National Neuroscience Nursing Conference held in London on 20 May.

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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