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@theibta.org 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@theibta.org 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 patient 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@theibta.org

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 8^th 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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