FYI Everyone

Begin forwarded message:

> From: Denis Strangman <string@...>
> Date: 10 September 2008 6:17:12 PM
> To: Newsletter 4: ;
> Subject: IBTA E-News
>
> IBTA E-NEWSLETTER 10 September 2008
>  
> Dear Friend of the international brain tumour community
>  
> Professor Ab Guha: Professor Ab Guha: We have advanced the
> distribution date of our E-Newsletter on learning that Canadian
> Professor Ab Guha, immediate past Chair of the Society for Neuro
> Oncology, has developed acute myelogenous leukaemia and is in urgent
> need of a bone marrow donor match, most likely from someone of South
> Asian (Indian) descent. Potential matches are encouraged to visit this
> website: http://www.onematch.ca/ An article in the Toronto Star about
> Ab can be accessed here. His assistant may be reached here. 
>  
> Genetic research: This past week has been an exciting time with the
> discovery of three new genes not previously linked with glioblastoma
> brain tumours and the coding of all the genes in a collection of 22
> brain tumours. One set of results came from the Cancer Genome Atlas
> Research Network (TCGA) and the other from researchers at the Johns
> Hopkins University in the USA. These findings might lead to the
> development of more precisely targeted therapies for brain tumour
> patients.
>  
> Meanwhile, investigators with the Australian Genomics and Clinical
> Outcomes of High Grade Glioma (AGOG) project have agreed with a
> submission by the IBTA Chair that donors of brain tumour tissue for
> research purposes be permitted to receive information about their
> genetic profile if they make a request to access the information.
>  
> Brain tumour research still lagging: A National Audit of Cancer
> Research Projects and Research Programs during 2003-2005, undertaken
> by Cancer Australia, showed a poor rating for brain tumour research
> when correlated with mortality: “When spending was analysed in terms
> of tumour mortality (Figure 20), funding for lung cancers, cancers of
> unknown primary site, pancreatic cancer, lymphoma and stomach,
> oesophagus and brain cancers showed proportionally lower levels of
> funding relative to mortality. There were also proportionally lower
> levels of funding to cancers of the bladder, kidney and gall bladder
> relative to mortality caused by these cancers.” (Page 30, Cancer
> research in Australia: An overview of cancer research projects and
> research programs in Australia 2003 to 2005.)
>  
> This confirms similar findings by Professor Neil Burnet in the UK.
> The study also revealed that 50% of funding for brain tumour research
> came from community based organisations. Without that injection,
> funding for brain tumour research from government sources would
> probably have represented the smallest amount for any of the top 20
> cancers.
>  
> Book distribution in the USA: 822 copies of the IBTA’s 92-page book
> about the First Walk Around the World for Brain Tumours have been sent
> to key US-based neurosurgeons, neuro-oncologists and brain tumour
> treatment centres for placement in their waiting rooms. Free copies
> are still available (depending on supplies) to brain tumour patients,
> caregivers and families. Contact: chair@... Reaction to the
> book continues to be very positive.
>  
> Brazil: An IBTA supporter is keen to undertake postgraduate social
> science research in Brazil around the subject of the standard of care
> for a typical brain tumour patient in Brazil. If anyone has any
> suggestions about contacts in Brazil to facilitate such research could
> they please contact the Chair at chair@... and the information
> will be forwarded to the researcher.
>  
> World Cancer Congress: As an associate member organisation the IBTA
> was represented at the World Cancer Congress organised by the UICC at
> Geneva during 27-31 August. The IBTA had a panel display which
> featured our main poster. Many of the 2,500 participants paused in
> front of the poster to absorb the key messages that a concentration on
> prevention, early detection, and screening, is irrelevant to brain
> tumours and that what is required is more research and greater support
> for the patent and caregiver. As the result of an appeal in the last
> E-Newsletter a brain tumour clinician was able to prevail upon friends
> and acquaintances to translate the poster into a host of languages:
> Turkish, Urdu, Chinese, Japanese, Thai, Spanish, Russian, French and
> German.
>  
> The IBTA was disappointed that its suggested addition to the World
> Cancer Declaration (launched at the Geneva Congress) of the following
> words was not accepted: “However, 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.” It could be that those associated with the less
> common cancers need to join together to develop a World Declaration
> highlighting their needs. In the UK the so-called less common or rarer
> cancers are responsible for at least 52% of all cancer mortality. If
> any groups are particularly interested in this possible project please
> contact chair@...
>  
> Palliative Care: We encourage individuals and organisations to add
> their signature to the Joint Declaration and Statement of Commitment
> Palliative Care and Pain Treatment as Human Rights
> It is unfortunate but brain tumour patients are heavy users of
> palliative and hospice care and much needs to be done in this area and
> that of pain control.
>  
> EANO: The IBTA will have a display at the 8th Congress of the European
> Association of Neuro Oncology to be held at Barcelona during 12-14
> September. Brain tumour advocates from supporting organisations in
> Lithuania, Sweden and Belgium will also be attending. IBTA secretary
> Kathy Oliver will speak at a satellite symposium in Barcelona prior to
> the Congress. All Congress participants will receive a free copy of
> the IBTA’s 92-page book about the First Walk Around the World for
> Brain Tumours.
>  
> Co-payments in the UK: The IBTA has made a submission to the review of
> co-payments in the UK arguing that brain tumour patients who seek
> access by private payment to promising new therapies not yet approved
> for general provision should not then be penalised by withdrawal of
> access to other treatment services provided by the National Health
> Service (NHS).
>  
> Singapore: IBTA Chair Denis Strangman stopped off at Singapore on his
> return from the World Cancer Congress to meet with the local brain
> tumour support group on 2 September and to visit a number of
> facilities, including the radiation oncology unit and wards at the Tan
> Tock Seng Hospital. Denis is grateful for the support received from
> Emily Ang LiLing (Senior Staff Nurse, Neurosurgical Nurse Clinician,
> and Facilitator of the Brain Tumour Support Group), Melissa Lim, and
> Eve Lee and family. Serene Tan facilitated a visit to the 40-bed Dover
> Park Hospice. Thanks also to UK-based physiotherapist Renuka Nadarajan
> who was instrumental in working with the IBTA regarding the Singapore
> visit and meeting.
>  
> Natasha King: Liz Emmett, the mother of eight-year GBM survivor
> Natasha King, has updated her story which is linked to from Al
> Musella’s Virtual Trials website. It is a story of courage and hope.
>  
> Lancet Oncology cover: The August 2008 issue of The Lancet Oncology
> features a drawing by a six-year old brain tumour survivor from India
> and may be downloaded as a JPEG file from here.
>  
> Awareness-raising walks: We know that people in many countries have
> been organising brain tumour awareness-raising walks and that steady
> progress has been made towards the target of three times around the
> world. We hope to report on a number of completed walks in the next
> issue. Distances will be accepted towards the total up until 1
> November (end of the Awareness Week).
>  
> David M Bailey Tour: Plans continue for the Northern European tour,
> organised by the IBTA during the Awareness Week, of the UK, Sweden and
> Denmark by US singer, songwriter and brain tumour survivor David M
> Bailey.
>  
>  
> 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.
>  
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>  
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