IBTA E-NEWS, JULY 2009

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Dear friend of the international brain tumour community

Awareness Week: There are now less than 100 days to the 3^rd International Brain Tumour Awareness Week to be held during 1-7 November. Please visit the IBTA website to obtain more information and please advise the IBTA if you wish to have your organisation listed as a supporter of the Awareness Week and the associated Walk Around the World for Brain Tumours. Last year 157 organisations were listed. Many of the world’s leading brain tumour organisations are already listed on the IBTA website for 2009. The 125^th anniversary on 25^th November 2009 of the first, documented, modern-day glioma operation, which is the subject of a 62-page booklet by the IBTA, could be a theme for activities (meetings, seminars, media releases) arranged by you or your organisation during the Week. Walks and other events, proposed or already held, will also be listed on the IBTA website if notified to the IBTA.

First documented modern-day glioma operation: The IBTA booklet (62 pages – available for purchase via PayPal on the IBTA website) has had a good reception. 5,000 copies were printed initially and a reprint of a further 3,000 copies will be finalised after the European holidays.

GliomaEd.com is a superb US-based resource which carries a one-hour video discussion of the highlights of ASCO in June as far as brain tumours are concerned, including newly diagnosed, recurrent, and metastases. The panel consists of Drs Martin van den Bent, David Reardon and Marc Chamberlain. It also features a podcast of the EANO/EORTC meeting in March for which the IBTA has also compiled a report available at this link. You have to register to access Glioma.ed, which is a simple procedure. Likewise with the Virtual Brain Tumor Board, hosted by Dr Allen K Sills and Memphis Healthcare in the USA, which is an on-line video discussion of brain tumour cases.

Clinical trials: The IBTA is very concerned to ensure that there is appropriate input by patient representatives into the design and conduct of brain tumour clinical trials. IBTA Chair Denis Strangman attended a recent meeting of the Australian clinical trials group (COGNO) as a member of its management advisory committee and this is a link to an edited version of his presentation.

COGNO will hold its 2^nd Annual Scientific meeting at the Annual Conference of the Clinical Oncological Society of Australia (COSA) during 17-19 November at which there will be an emphasis on both lung cancer and brain tumours. Distinguished visiting lecturers will include: Dr Roger Stupp (Switzerland), Dr Renato V La Rocca (Kentuckiana Cancer Institute), and Dr Normand J La Perriere (Canada). In association with Brain Tumour Alliance Australia (BTAA) the IBTA will distribute its book about the first glioma operation. The COSA neuro-oncology group will also meet during the conference.

News from companies: Officials from Hoffmann-La Roche AG in Switzerland have responded to some of the questions raised with them by the IBTA about Avastin, particularly in connection with compassionate access schemes for brain tumour patients in the pre-regulatory stage. They state that they are assessing the question of “… the possible structure and feasibility of special access approaches … especially in less affluent economies”.

NovoCure reports that enrolment has begun in the “Prospective, Multi-center Trial of NovoTTF-100A Together With Temozolomide Compared to Temozolomide Alone in Patients With Newly Diagnosed GBM”. There are 15 sites recruiting worldwide with more on the way.  Details can be found on the clincaltrials.gov listing and on the NovoCure website

Eli Lilly and Company has launched the “Lilly Phenotypic Drug Discovery Initiative, or PD2 (pronounced PD-squared)”, which uses Lilly-developed disease-state assays and a secure web portal to evaluate the therapeutic potential of compounds synthesized in university and biotechnology laboratories. It is intended as a two-way process between Lilly and external research institutions, including those working on cancer therapies. More information here.

Webpages/blogs/diaries: There is an increasing trend for brain tumour patients and their caregivers to create websites or blogs reporting on their journey. IBTA Chair Denis Strangman did this some years ago with the journey of his late wife Marg and his site contains links to dozens of web diaries for brain tumour patients initiated at the same time. Here is a link to a current blogspot of a brain tumour patient, which is for Maria and Troy Kaizik. The Caring Bridge website is a means by which personal webpages can be created. MyLifeLine.org, whose principals the IBTA met at ASCO, is another. Even some health professionals have blogs and here is a link to an interesting one maintained by Dr Brian E. Moore, a neuropathologist from Illinois.

In May there was a media report of the body scanning work being done by the (US) Armed Forces Medical Examiner Systems (AFMES) on the bodies of personnel killed in action. The IBTA wrote to AFMES, asking if they had undertaken work on the incidence of brain tumours discovered incidentally in this work. The response was disappointing, in so far as they said they have not but other areas of Defense are looking at traumatic brain injuries. Furthermore, they implied that because they were dealing with “a young, generally healthy population” they would not find brain tumours. Readers in the USA might care to pursue this matter – it could be a useful research and statistical opportunity, even acknowledging the problem of being able to diagnose solely by a scan.

Senator Ted Kennedy: US Senator Kennedy has not released very much information about his treatment but in a recent issue of Newsweek he wrote: “Last year, I was diagnosed with a malignant brain tumor. Surgeons at Duke University Medical Center removed part of the tumor, and I had proton-beam radiation at Massachusetts General Hospital. I've undergone many rounds of chemotherapy and continue to receive treatment.”

Lithuania: In May we reported the untimely passing of Ingrida Blazyte Byciuviene, who helped establish the Lithuanian brain tumour support group, Kartu Lengviau. We were pleased to learn recently that 34 year old Ugnius Smalskys will continue the good work initiated by Ingrida.

Poland, Hungary, Romania: In collaboration with our friends in the European Cancer Patient Coalition (ECPC) the IBTA recently applied to a Foundation for financial assistance to undertake brain tumour awareness-raising work in Poland, Hungary and Romania in 2010. Although unsuccessful on this occasion we have been “strongly encouraged” to apply again in 2010 for work in those countries in 2011. Meanwhile, readers in the three countries should contact the IBTA if they are interested in working with us on this project.

Japan: Our colleagues from the Japan Brain Tumour Alliance held a very successful day for brain tumour patients and their families at Nagoya recently. This is a link to our report of the WFNO/ASNO conference held at Yokohama in May, at which the IBTA exhibited with the JBTA and participated in the patients’ session.

RARECARE: The IBTA Co-Director, Kathy Oliver, attended a recent stakeholders' meeting of the RARECARE project in Treviso, Italy, on behalf of the European CanCer Organisation Patient Advisory Committee (ECCO PAC) and the IBTA.  The RARECARE project provides an operational definition of rare cancers and a list of cancers which reflect that definition. Kathy's report of this RARECARE meeting (from the brain tumour patient and caregiver perspective) can be downloaded from here.

European activities centred on rare cancers are gaining momentum and the IBTA has been involved at an organisational level in a number of these.  A new campaign, the "European Action Against Rare Cancers", stems from the high-level ESMO (European Society for Medical Oncology) conference held in Brussels in November 2008.  Please do visit this website and sign the online "Call to Action" to show your support of the campaign's important recommendations.  Additionally, Kathy Oliver is involved in the organising group for the forthcoming EPPOSI (European Platform for Patients' Organisations, Science and Industry) 10th Workshop on Partnering for Rare Diseases Therapy Development in Brussels on 26 and 27 October in the Belgian Federal Parliament.  This conference will include a rare cancers stream.

The IBTA will be exhibiting (Stand F42 in Hall 11.1) at the joint ECCO 15th  -  34th ESMO  Multidisciplinary Congress which takes place in the Internationale Congress Centrum Berlin (ICC Berlin) in Germany from Sunday, 20th to Thursday, 24th September, 2009.  There will also be a two-day Patient Advocacy/Ethics Track on 21st and 22nd September at which the IBTA Co-Director, Kathy Oliver, will be speaking.  For a Roundtable film preview (which includes Kathy as a panelist) of the Congress please visit this link. An article by the IBTA about advocacy and collaboration also appears on the ECCO website here.

Conferences: IBTA Chair Denis Strangman plans to attend the patient-oriented Brain Tumor Advanced Treatments Conference to be held at Oregon (USA) during 18-19 September. Copies of the first glioma operation book have been shipped to Oregon for distribution to the participants. The conference is being organised by Al Musella of Virtual Trials and John Williams. Denis will then join Kathy Oliver at the IBTA display at the ECCO-ESMO Conference (see above). In July Denis visited brain tumour support groups in Brisbane and Perth (Australia). IBTA Co-Director Kathy Oliver also attended a conference organised by Brain Tumour UK and the annual meeting in June of the British Neuro Oncology Society (BNOS) and spoke at the BNOS Conference dinner.

Paediatric: Loice Swisher, who is a paediatric brain tumour advocate from the USA, has raised with us the question of brain tissue donation for paediatric research in particular. It is a subject we are pursuing. Meanwhile, here is a link to a heart-rendering on-line video of a little girl (Alicia) who had a Diffuse Intrinsic Pontine Glioma (DIPG).

Depression: Our colleagues in BTAA are compiling academic articles and evidence relating to the connection between the diagnosis of a brain tumour and the emergence of depression and/or symptoms of distress. This is a link to the results of a recent literature search. Please let us know if you are aware of other relevant research and literature.

Brain tumour caregivers. The IBTA has written a paper on aspects of the brain tumour caregiver's journey for a UK consultation on cancer survivorship. The paper has been supported by the Samantha Dickson Brain Tumour Trust and Meningioma UK The paper was included in Cancer 52's participation in the National Cancer Survivorship Initiative (NCSI) research work stream to map the research questions relating to the survivorship needs of people affected by the less common cancers.  The paper can be downloaded from here.

Translations: The IBTA has been giving thought to how it might convey information on-line to non-English speaking brain tumour patients and families in the world. Although English is rapidly entrenching itself as the language of the Internet many of the world’s population do not read or speak English. Al Musella, who hosts the Virtual Trials website, has included an on-line translation facility which enables visitors to translate the content of his website into one of 14 major languages, including German, Spanish, French and Japanese. If you have multi-language skills please visit his website (www.virtualtrials.com), choose a language, translate the webpage, and let the IBTA know if the translation is of an acceptable standard.

Events: For a listing of brain tumour-relevant scientific and patient conferences, please see the IBTA website. Additionally, the World Hospice and Palliative Care Day will take place on 10 October, with a theme of “Discovering your voice”. The 7^th international cancer conference organised by the African Organisation for Research and Training in Cancer (AORTIC) will be held in Dar es Salaam, Tanzania, during 11-14 November. Don’t forget the Joint Meeting of SNO and the Tumor Section of the AANS/CNS 22-24 October, New Orleans.

Thank you for your continuing support.

Denis Strangman (Chair and Co-Director)                                     
International Brain Tumour Alliance IBTA 
www.theibta.org

Kathy Oliver (Co-Director)
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 Co-Director’s address above, not to the registered office.

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