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IBTA Newsletter

Posted on: 12/06/2009

IBTA E-News December 2009
If you are having difficulty reading this E-News please go to the Web version.
Dear Friend of the International Brain Tumour Community
We wish all our readers a very happy holiday time and best wishes for 2010 in the hope that a cure for brain tumours will be discovered.
Brain tumour experts visit Australia:
Drs Roger Stupp (Switzerland), Normand Laperriere (Canada), Renato LaRocca (USA) and Jacques Grill (France) attended and spoke at the Annual Scientific Meeting of the Clinical Oncological Society of Australia (COSA) in November. A 13-page report of the brain tumour relevant sessions can be accessed in HTML format here.
Awareness Week and Walk Around the World: The International Brain Tumour Awareness Week (1-7 November) and the Walk Around the World for Brain Tumours have again been a success with dozens of walks and events being held in different countries. We are still waiting for some reports but we have already exceeded our World Walk target of 200,000 kms (five times around the world at the Equator) with a total to date of 224,862 kms, involving 37,537 people, who raised the equivalent of at least $3.4m USD for their local brain tumour research and support organisations (no funds go to the IBTA). Walks were held in: Australia, Canada, France, Hong Kong, India, Italy, Japan, Lithuania, Netherlands, Scotland, Spain, UK, USA, and Zimbabwe. Brief reports of some events can be viewed here and here. Could you please send any unreported walk distances and participant numbers to: These two annual IBTA events are now well established and were supported in 2009 by 182 patient and professional organisations from around the world.
SNO and other conferences: IBTA Co-director Kathy Oliver attended the 2009 Joint Meeting of the Society for Neuro-Oncology (SNO) and the AANS (American Association of Neurological Surgeons)/CNS Section on Tumors, held at New Orleans, USA, 22-24 October 2009. Kathy’s report of that conference and a brain tumour conference organised by the UK Royal Society of Medicine, and a rare diseases conference held in Brussels, can be accessed here.
Survey: The IBTA will conduct a survey of the 3,500 contacts who receive this E-News to identify a suitable date range for the 2010 International Brain Tumour Awareness Week. We will also ask those surveyed for suggestions of a name for our 2010 publication which will be printed in a magazine style and contain articles and interviews. The plan is to design it in the style of a typical magazine that one would find in a Doctor’s waiting room but to draft the content so that it will also be suitable for circulation at brain tumour conferences.
UK Parliamentary action
: In early November in the United Kingdom, Lord Carlile of Berriew QC kindly tabled a Parliamentary Question (PQ) about brain tumours in the House of Lords to which he received a response from Baroness Thornton. Her response can be found here. Baroness Thornton acknowledged the work of the British Neuro-Oncology Society in their project on developing guidelines for the treatment of four rarer brain tumours.
Scottish Parliamentary action: A motion was placed in the Scottish Parliament on 29th October by Dr Richard Simpson MSP (Member of the Scottish Parliament) about the International Brain Tumour Awareness Week and Walk Around the World for Brain Tumours. Dr Simpson in his question recognised the work of the IBTA, and the work of others in Scotland in developing the managed care system.
Australian Health Minister: In a message of best wishes coinciding with the Awareness Week the Australian Federal Health Minister Hon Nicola Roxon MP wrote: “The International Brain Tumour Alliance and the Brain Tumour Alliance Australia are to be commended for their efforts in supporting, providing advocacy and coordinating information groups for brain tumour patients, carers and health professionals both across the world and in Australia …” and referred to actions taken in the cancer area by the Australian Government.

Awareness Week in Zimbabwe: Christine Mungoshi, Director of the Zimbabwe Brain Tumor Association wrote to us from Harare to say that her organisation held a very successful event.  She said: "We even appeared on our local television, with a clip of me and the scanner which had been generously donated to our local Harare hospital by a hospital in the UK. We had 180 people who walked 4.5km each, making a total of 810 kms donated to the Walk Around the World for Brain Tumours target. More than 200 people attended the function. It was a true awareness raising event as many people were not aware of the impact of brain tumours and also the existence of our organisation. It was surprising that even at the hospital where we do our work, not many people were aware of our organisation. They saw some of our members but did not know what we did."  This is another example where an activity during the Awareness Week directly raises awareness in the local community.
Hope: A brain tumour patient in Lithuania has penned these words about "hope" used by the brain tumour support group Kartu Lengviau in their new publication for patients, which can be viewed here. The translation reads as follows:
Do not believe that everything in life is lost.                       
If you yet are privileged with eyes and hands,             
Though are buried deeply by the mounting costs,            
Stand poised and make new lofty plans.
Happiness does not require [a] lot, merely vivacity and courage,
But lost- is not the one who comes back
But one that runs, himself abandoning all costs.

Meanwhile, 9-year GBM survivor Cheryl Broyles (USA) has written words about “Hope” to other patients and caregivers. You can read her thoughtful message here.

Guidelines: The newly published Australian “Clinical Practice Guidelines for the management of adult gliomas: astrocytomas and oligodendrogliomas” are available in PDF format here. Meanwhile, the first ever evidence based guidelines on treatment of brain metastases were released at the Congress of Neurological Surgeons held at New Orleans and will be published in a special issue of the Journal of Neuro-Oncology in December.
Books: Brain tumour survivor Sally White, whose mother and uncle both died from brain tumours, has written an inspiring book “Three quotes from a plumber” about her journey with an oligoastrocytoma. We have uploaded a review here. There is another review available for download from here. Dr Paul Zeltzer has made available his two books for patients and caregivers “Brain Tumors: Leaving The Garden of Eden” and “Brain Tumors: Finding the Ark” at a reduced price if you buy both together. At a more academic level Professor Erwin G Van Meir has edited a 49-chapter, 1284 page book “CNS Cancer”, published by Springer, which can be bought from this website. Individual chapters can be downloaded in PDF format from here .
CHMP rejects Avastin: Roche announced (20 November) that the Committee for Medicinal Products for Human Use (CHMP), which is responsible for conducting the initial assessment of medicinal products that have been filed for marketing authorisation in Europe, has issued a negative opinion relating to the approval of Avastin (bevacizumab) alone or in combination with irinotecan chemotherapy for the treatment of relapsed or progressive glioblastoma (GBM), the most aggressive type of primary malignant brain cancer. The filing was based on results from the phase II BRAIN study (AVF3708g).
Ben Williams update: GBM long-term survivor Dr Ben Williams has updated his paper “Treatment Options for Glioblastoma and Other Gliomas”. You can download the 110-page paper from Al Musella’s website.
Michel T. Rudolphie of the Dutch patient group Stiching advises that they have created a second website specifically for children with a brain tumour.
Interview: A short video interview with IBTA co-director Kathy Oliver, speaking about the European Action Against Rare Cancers, can be viewed on-line from this webpage. Kathy gave a presentation "Exploring Common Misconceptions About Rare and Less Common Cancers" to a breakaway session at the Britain Against Cancer Conference held on 1 December, which can be downloaded in PDF format from here.
Taiwan: IBTA Chair Denis Strangman staffed a display booth and delivered a presentation at the International Symposium of Pediatric Neuro-oncology for the 50th Anniversary of Taipei Veterans General Hospital and the Annual Scientific Meeting of the Chinese Medical Association, held in Taipei during 30 October – 1 November. The Symposium was Chaired by Professor Tai-Tong Wong. A brief report of the meeting can be downloaded from here. Denis’s presentation, with some introductory words in Mandarin, can be viewed here. A presentation by Denis to a forum of brain tumour patients and caregivers at the Royal Melbourne Hospital, after he returned from Taiwan, can be downloaded from here.
Translated materials: By the way, we are always keen to identify links to brain tumour patient resources in languages other than English. We received an enquiry about Portuguese language resources recently but did not know of any. We also recently received a request for material in Cantonese.

European developments: The ‘Alliance for MRI’ is a coalition of European Parliamentarians, patient groups, leading European scientists and the medical community, who together “are seeking to avert the serious threat posed by EU health and safety legislation to the clinical and research use of Magnetic Resonance Imaging (MRI)”. An article about the campaign has appeared in The Parliament magazine. In a similar manner there is continuing concern about the unintended consequences of the EU Clinical Trials Directive and a useful discussion article has appeared in PLoS Medicine. In both instances one gains the impression that those who were privy to the draft plans did not realise the possible consequences of the legislative actions and failed to alert their colleagues or the wider community in a timely fashion.
Blogs by brain tumour patients: We mentioned the emerging trend of blogs by brain tumour patients in the last E-News. Here is a link to another blog, by “Donna”, who is a GBM patient. Donna would welcome feedback.
Clinical trials: The University of Navarre Hospital in Spain has initiated a clinical trial of a dendritic immunotherapy approach for GBM patients, one of many that are now underway internationally. A lengthy media report of the Spanish trial can be accessed here.
Thank you for your continuing support.
Denis Strangman (Chair and Co-Director)                                     
International Brain Tumour Alliance IBTA

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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