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IBTA Newsletter

Posted on: 12/15/2008


E-News 15 December 2008
Dear Brain Tumour contact
The International Brain Tumour Alliance (IBTA) would like to wish everyone the best for the holiday season and a very successful 2009.
These are hyper-links relevant to the content of the Newsletter below:
Al Musella’s oligodendroglioma research fund:
IBTA submission to NICE consultation on End of Life medicines:
Article in French about the IBTA:
Media release of Mike Ferguson’s article about Katja’s Walk:
Hanneke Zwinkels article about the neuro-oncology nurse: 
Lloyd Morgan handout re pediatric initiative:
Cancer Institute NSW Fact Sheets for brain tumour patients:  
Link to the new Brain Tumour Alliance Australia organisation:
Health technology assessments paper:
Society for Neuro-Oncology Conference: Held in the interesting location of Las Vegas during 20-23 November it was a tribute to the organisational ability of the SNO staff Chas, Jan and Linda. Each participant will have their own perspective of the event but from a patient and caregiver viewpoint it was encouraging to observe the gradual integration of quality of life (QOL) studies into the overall framework of neuro-oncology research and clinical trials. There was an enthusiastic meeting of nurses and other health professional staff who might reframe their on-going input to the Conference as being based around QOL issues.
The “take home message”, as they say, is that there are a number of promising new therapies and combination therapies being looked at with key trials taking place during 2009. They include Avastin, Cilengitide, Cediranib, Neuradiab, CDX-110, DCVax, Cerepro, and AP12009. There is also the trial of the Novo-TTF device which is on-going and the dosing trials for temozolomide. Shortly after the conference Schering Plough announced approval in Europe for the intravenous administration of temozolomide and a sachet packaging presentation for Temodal capsules. On 1 December Ark Therapeutics announced that it had filed a Marketing Authorisation Application for Cerepro with the EMEA.
An overall impression is that the role and dynamics of Avastin (bevacizumab) in relation to GBM has not been fully established. To better prepare ourselves for the SNO conference IBTA advisor Chris Tse sought to assemble some of the key material about Avastin and that document is linked to from the news section in the IBTA website. It should be read in conjunction with the abstracts from the SNO Conference that will be available later.
The IBTA is grateful to Professor Jonathan Finlay and the SNO international outreach committee for permitting a short presentation about the IBTA’s project to identify and highlight the needs of brain tumour patients in the low and middle income countries. A copy of this presentation may be accessed from the IBTA website.
After the session Professor “Skip” Grossman explained that a project he has been working on with colleagues for more than ten years is now coming to fruition. This is the subcutaneous implantation of a slow-release wafer (no bigger than a shirt button) containing hydromorphone for pain control in terminal patients. It could be of great benefit to brain tumour patients in the less developed countries where standard therapy is non-existent and access to opioids is fraught with problems of theft, blackmarkets and supply chain disruption.
Most of the major USA brain tumour patient and caregiver organisations were present at SNO and it was useful to renew contacts and to learn of their work.
Organisers of the World Federation of Neuro Oncology (WFNO) meeting to be held in Japan in May 2009 were present at the SNO conference promoting their meeting and the IBTA hopes to participate in that important event.
2009 Awareness Week: As mentioned in a recent E-News, our supporters have selected the first week of November (Sunday 1 November to Saturday 7 November) for the 2009 International Brain Tumour Awareness Week. The 2009 World Walk will commence on 1 January 2009 and end on 7 November.
From information to hand 48,714 people in over 100 walks in 31 countries walked 223,088 kms (five times around the World at the Equator) and raised the equivalent of $9.6m USD for brain tumour research and support (none of the funds goes to the IBTA) during the 2008 World Walk. Of particular note was the effort by Katja Viventsova, who has a brain tumour, and her partner Mike Ferguson from Canada, who involved 189 friends, colleagues and family members, in individual walks in 92 cities and regions on five continents. (See the IBTA website for a media release written by Mike.)
The World Walk and the International Awareness Week are now established events on the brain tumour calendar. Reports of walks and activities held may be accessed from the IBTA website. We have not yet decided how to use photos and reports from these events in 2009 but we will certainly produce an awareness-raising book.
Happenings: The National Brain Tumour Foundation and the Brain Tumour Society in the USA have merged to form the National Brain Tumour Society (NBTS) with offices on the West and East Coasts. Brain Tumour Australia has been voluntarily wound up and a new national patient and caregiver group, Brain Tumour Alliance Australia (BTAA), has been established. Australian Senator Catryna Bilyk proposes to establish a Brain Tumour Parliamentary Interest Group in early 2009, which will be similar to the All Party Parliamentary Brain Tumour Group in the UK Parliament. New CEO Elisabeth Wilson has taken up her post at the ABTA office. US patient advocate Lloyd Morgan is continuing with his campaign for a pediatric brain tumour initiative in the US Congress. Details are available from the IBTA website. A Turkish brain tumour group has also been established and the Indian Neuro Oncology group was established at a meeting in Delhi. The neuro oncology group of the Cancer Institute NSW has produced a series of fact and resource sheets about “managing changes to thinking and behaviour” that are relevant to a person following the diagnosis of a brain tumour. The link to downloadable PDF copies is on the IBTA website. Hanneke Zwinkels, an advanced nurse practitioner in the Hague, who was present at the foundation meeting of the IBTA in 2005, has written an article about a Dutch perspective on the neuro-oncology nurse for the British Journal of Neuroscience Nursing. A copy can be downloaded from the IBTA website. Health Equality Europe has produced an excellent background paper about Health Technology Assessments which can be downloaded from the IBTA website. IBTA secretary Kathy Oliver gave a short presentation at the annual conference on 4 December of the (UK) Association of Neuro Oncology Nurses (ANON). It was a great shock to learn of tumour recurrence for American singer and songwriter David M Bailey, shortly after his return from a European tour sponsored by the IBTA. David has had a craniotomy and will receive experimental treatment. We wish him well. IBTA Chair Denis Strangman has been chosen to serve on an Australian government committee investigating the evidence for subsidisation of PET scans for sarcoma and glioma, to commence in March 2009, and would welcome contact from anyone with expertise in this subject.  Al Musella from the Virtual Trials website is seeking to raise funds to enable an oligodendroglioma arm of the trial being conducted by Dr Hideho Okada (Uni of Pittsburgh). See the IBTA website for a link. The IBTA also made a submission to the (UK) NICE consultation on End of Life Medicines (available on our website). The IBTA was sorry to learn of the passing of Seamus Feely in San Diego on 30 November. Seamus and his wife Eileen helped staff the IBTA display at the June 2008 ASCO conference in Chicago. We offer our sincere condolences to Seamus’s wife Eileen and their family.
Sir Rickman Godlee: IBTA secretary Kathy Oliver has met with a family contact in the UK to appraise him of the IBTA’s plans in 2009 to commemorate the 125th anniversary of the first documented modern brain tumour surgery in 1884 performed by Sir Rickman. Because of the absence of a SNO conference in 2009 (due to the quadrennial WFNO meeting) there is to be a neuro oncology component associated with the annual meeting of the Congress of Neurological Surgeons being held at New Orleans during 24 to 29 October 2009. This represents an opportunity to develop a suitable joint commemoration of this historic event by elements of the neurosurgical and neuro-oncology communities. 
Europe and Africa: The AORTIC (African Organisation for Research and Training in Cancer) has translated an article about the IBTA into French which is available from our website. AORTIC will be holding its seventh conference “Cancer in Africa – the New Reality” at Dar es Salaam, Tanzania, during 11-14 November 2009. Kathy Oliver (Secretary, IBTA) attended a meeting about rare tumours in Brussels on 6 November after serving on the planning committee. Ella Pybus, who is from Meningioma UK and is a Trustee of Brain Tumour UK, gave a presentation in Brussels of the patient perspective on access to care. There is certainly a developing focus in Europe on the so-called rare or less common cancers, with those associated with brain, pancreatic, thyroid and other cancers, including cancers of unknown primary, finding common purpose. 
Thank you for your continuing support.
Denis Strangman (Chair)                                     
International Brain Tumour Alliance IBTA

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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