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Dear Friend of the international brain tumour community
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.
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Denis Strangman
Chair IBTA
Kathy Oliver
Secretary IBTA
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International Brain Tumour Alliance – IBTA
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.
Official Website: www.theibta.org
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