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IBTA E News March 2011

Posted on: 03/20/2011

IBTA E News March 2011
If you are having difficulty reading this E News please go to the web version.
Dear Friend
Earthquakes and Tsunamis:
The natural disasters in Christchurch, New Zealand, and Japan have captured world attention and we are very sad for the people whose lives have been affected. We will reproduce in the forthcoming IBTA magazine an inspiring story from Christchurch about a pathologist who put on his bicycle helmet and returned to his destroyed pathology laboratory to retrieve brain tumour samples which he later processed in his garage so that patients would not miss out on their diagnosis. We have emailed a number of our contacts in Japan and most have responded that they are okay but they described the experience of the earthquake as terrifying.
Rehabilitation for patients with primary CNS tumours
: Two new papers have been published in the United Kingdom on this very important, but often neglected, topic. The first, What's the point? exploring rehabilitation for people with primary CNS tumours using ethnography: patients' perspectives by Diz Hackman, a physiotherapist at the Royal Marsden Hospital in Sutton, Surrey, (see abstract here) discusses the positive contributions rehabilitation makes to quality of life in these patients.  The second paper, by Aileen McCartney, a physiotherapist at Wisdom Hospice in Rochester Kent, (see abstract here) is entitled Exploring access to rehabilitation services from allied health professionals for patients with primary high-grade brain tumours.
Sarah Smith: Many readers of this E News will remember the little girl who featured on the cover of our Brain Tumour magazine in 2010. Her name was Sarah Conway Smith and she died on 1 March, just a few months short of her ninth birthday. She had a Choroid Plexus Carcinoma brain tumour and lived in London, Ontario, Canada. A large poster of the cover of our magazine was displayed at the SNO and ISPNO conferences and this poster was sent to her father to give to Sarah just before Christmas 2010. When her father had told her in 2010 that we proposed to use her photo on the cover she said that would be “cute”. There is a very inspiring article about Sarah’s life which can be accessed here. We send our condolences to Sarah’s parents and sister and extended family.

Leukaemia group helps non-leukaemia research: In a remarkable act of generosity the UK-based Children With Leukaemia group has launched a funding project with a total of 2 million GBP (about $3.2 m USD) for researchers who will investigate the aetiology of leukaemia or any other childhood cancer. There is room for international collaborative efforts but the lead applicant must be a UK institution. They state: “We are particularly interested in the role of early exposures in the aetiology of childhood cancers. By this we mean early exposure (including pre-conception, in utero and early childhood) to environmental risk factors in the broadest sense (including, for example, such factors as infectious exposure and diet). We are interested in the investigation of how mutations arise and in the basic biological mechanisms of childhood cancer development and the impact of environmental factors on these mechanisms.” Further information is available here. The first deadline is 27 May.

Press Don’t Panic: A brain tumour survivor has spent four years successfully developing a small alarm system called Press Don’t Panic which can be worn on a person’s lapel or coat. It is intended for epilepsy patients and others who have sufficient warning to know that an attack is coming on. Once pressed, the alarm emits a repeated audio message about the person and their medical condition. It can be recorded in any language. There is a newspaper story about the device here.
EANO/EORTC: IBTA Chair Denis Strangman and co-director Kathy Oliver plan to attend the forthcoming EANO/EORTC meeting in Bucharest. On the same trip Denis will attend a rare solid tumours conference in Stresa, Italy, and an inaugural forum for brain tumour patients and carers to be held in Copenhagen on 5 April. He will also join with Kathy and leaders of the UK brain tumour charities and brain tumour patients, carers, healthcare professionals and others in a march and lobby at Parliament in Westminster, which is one of the activities during the UK’s brain tumour awareness month.
DIPG conference: We understand that 70 researchers from seven countries and representatives from 13 foundations were due to attend the Pediatric Brain Cancer Symposium, being held at Cincinnati Children's Hospital Medical Center on Friday 18 March. More information is available here.

Australian statistics. Researchers at the Australian Institute of Health and Welfare have advised Susan Pitt, Vice-Chair of Brain Tumour Alliance Australia, their calculation of average annual brain tumour statistics for 2003-2007 (latest available period). They are: Brain tumours were the leading cause of cancer death in children aged 0-14 years, with an average of 33 deaths per year. Brain tumours were the leading cause of cancer death in people aged 0-39 years, with an average of 120 deaths per year. Brain tumours were the leading cause of cancer death in males aged 0-44 years (an average of 95 deaths per year). It was the second leading cause of cancer death in females aged 0-44 years (an average of 69 deaths per year) behind breast cancer (an average of 197 deaths per year). These relative findings are likely to be similar for other countries that have cancer registries.

FDA and NovoCure TTF-100A device: The FDA Neurological Devices Advisory Panel of the Medical Devices Advisory Committee voted 7 to 3 in favour of the NovoTTF-100A System for patients with supra-tentorial glioblastoma multiforme tumors that recur after maximal surgical and radiation treatments. According to the panel, there is reasonable evidence demonstrating that the benefits of the system as monotherapy outweigh the risks associated with standard medical therapy. See this news item.

IBTA magazine: Work is progressing on the 2011 edition of the IBTA’s Brain Tumour magazine. People have been very generous with their time and effort in answering our interview questions, supplying illustrations, and submitting articles. We believe with some modesty that the content will be even better than our effort in 2010. If you did not receive a copy through the postal system in 2010 you are welcome to register for a free copy here.

SIOP: Participants attending the SIOP conference in Auckland during 26-30 October will find that a session stream has been set aside for CNS malignancies on the Thursday.

5-ALA: Regular readers will be aware of our interest in 5-ALA as a means of assisting neurosurgeons to remove as much tumour as possible. 5-ALA helps by displaying a different fluorescent colour for tumour cells as opposed to unaffected cells. There is a trial of the procedure commencing in the USA and now in the UK there will be a feasibility trial (the GALA-5 trial) for UK residents only, involving the combined use of 5-ALA and Gliadel wafers which has been supported by Cancer Research UK and the Samantha Dickson Brain Tumour Trust.

Radiotherapy: Prior to the emergence of the concomitant therapy for glioblastoma brain tumours the previous significant advance in treatment therapies had been the establishment of the efficacy of radiation therapy almost thirty years earlier. We should spare a thought for Marie Curie, 2011 marks the 100th anniversary of Marie Curie receiving the Nobel Prize in chemistry for discovering radium and polonium, from which many cancer patients have benefited.
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-Directors address above, not to the registered office.


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