FYI Everyone

Begin forwarded message:

> From: Denis Strangman <string@...>
> Date: 20 August 2008 1:39:30 AM
> To: Newsletter 4: ;
> Subject: IBTA Newsletter
>
> Dear Friend of the international brain tumour community
>  
> Olympics: With recent news focussed on the Olympics let us not forget
> the inspirational Scots runner Eric Liddell who steadfastly followed
> his beliefs and was portrayed in the film Chariots of Fire. He was
> interred during World War II in a prisoner of war camp in China and
> died from a brain tumour just before the end of the War.
>  
> Website links: Help us to help you - We understand that the Google
> page rank algorithim is based on the number of external links to one's
> website. We are happy to link to your website so that those with an
> interest in brain tumours will quickly locate you. We would be
> grateful if you could link to the IBTA web site (www.theibta.org) in
> return, for our mutual benefit and that of patients, families,
> caregivers and professionals who work in the field of brain tumours.
>  
> Conferences: The IBTA will be represented at the World Cancer Congress
> to be held in Geneva next week. We have prepared a large poster for
> display which seeks to convey the main messages about brain tumours to
> the 2,000 cancer control delegates from around the world who will be
> attending. It is both stark and direct but also positive and can be
> downloaded from here.
>  
> A further version incorporating the dates of the World Walk and
> Awareness Week will be available soon. We are looking for volunteers
> who could translate the content into their own language and convey the
> text to the IBTA for the preparation of multi-language versions.
> Contact the Chair: chair@... Following the Geneva meeting the
> IBTA will be represented at the EANO (European Association of Neuro
> Oncology) conference to be held during 12-14 September in Barcelona.
>  
> Singapore: The IBTA Chair will meet with members of the Singapore
> Brain Tumour Support Group on 2 September.
>  
> Palliative Care: The IBTA, together with eighteen other global
> organisations, including the International AIDS Society, International
> Psych Oncology Society, and the World Institute of Pain, was invited
> to and has signed the Joint Declaration and Statement of Commitment
> Palliative Care and Pain Treatment as Human Rights. We are conscious
> that many brain tumour patients are, unfortunately, involved with
> palliative care because of the nature of their disease.
>  
> Low and middle income country project: This IBTA project, which seeks
> to obtain a snapshot of the standard of care received by brain tumour
> patients in a representative sample of low to middle income countries
> is continuing. Letters have been sent to the leaders of cancer control
> organisations from a number of relevant countries who are attending
> the World Cancer Congress seeking to discuss their possible
> involvement with the project.
>  
> Submission to NICE: The IBTA, in conjunction with Brain Tumour UK and
> Meningioma UK, has made a submission to the UK NICE (National
> Institute of Clinical Excellence) concerning QALYs (Quality Adjusted
> Life Years) and the severity of illness. A copy is available here.
>  
> BTUK Patient Conference: A presentation by IBTA Secretary Kathy Oliver
> to the Birmingham patient conference organised by Brain Tumour UK may
> be downloaded from here. Kathy refers in her presentation to several
> emerging therapies of interest to brain tumour patients
>  
> Patient access to their genetic information: In both the UK and
> Australia the IBTA has been involved in discussions of the rights of
> brain tumour patients who donate tissue or blood for research, to
> obtain access to their genetic information which might assist them
> with identifying promising new therapies based on genetic markers.
>  
> Book reviews: We have added a review of a new book of interest to
> brain tumour patients, Life’s Mountains by eight-year GBM survivor
> Cheryl L Broyles from California, to our publications area. The review
> may be accessed here. We believe that newly diagnosed patients will
> find it of help and inspiration.
>  
> IBTA awareness-raising book: The 92-page book published by the IBTA in
> the UK and Australia to commemorate the global achievements of the
> World Walk and Awareness Week in 2007 has been very well received. A
> selection of comments from readers is available here where patients,
> caregivers and family may also request a complimentary copy (depending
> on stock supply).
>  
> David M Bailey Tour: Things are shaping up very well for an excellent
> 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. Brain tumour support groups in the UK,
> Sweden and Denmark are involved.
>  
> Zimbabwean sculpture: The IBTA was honoured recently by the
> presentation of a very special tribute to the organisation by
> Christine Mungoshi of the Zimbabwe Brain Tumour Association (ZBTA) who
> is currently visiting the UK.  The ZBTA commissioned Zimbabwean artist
> Dominic Benhura to recreate the IBTA's logo in stone. Dominic, one of
> Africa's most outstanding sculptors is well-known for his emphasis on
> form and movement in his work.  In 2003, a massive Dominic Benhura
> sculpture called "Swing Me Mama" was presented to Nelson Mandela in
> Johannesburg, South Africa.  This 1,000 pound piece now sits outside
> of Mr Mandela's office.  The IBTA sculpture, generously donated by the
> ZBTA, is somewhat smaller (!) but no less gratefully received and very
> much appreciated.
>  
> Awareness-raising walks and the World Walk: Many groups have again
> notified the IBTA of brain tumour fund-raising and awareness-raising
> walks in which the combined distance walked has been contributed
> towards the World Walk target of three times around the world at the
> Equator (120,000 kms) and the funds raised have gone to local brain
> tumour research and support groups (not the IBTA). Here are some
> recent reports. Please contact the Chair if we have omitted to report
> your event:
>  
> IBTA advisor Sally Payne and her group donated a combined distance of
> 1,163 kms achieved during their recent visit to Europe.
>  
> Susan Marshall from the Brain Tumour Foundation of Canada advised that
> 4,500 participants in the BTFCs 2008 Spring Sprint walked a total of
> 16,300 kms and raised $1.38m for brain tumour support and research.
>  
> Peter Buller, a twenty-five year survivor of a brain tumour walked 290
> miles from Glastonbury to Walsingham (UK) in May and June.
>  
> Mike Logsdon from the National Brain Tumor Foundation (NBTF) reported
> that there were 1525 participants in the 2008 San Francisco Bay Area
> Brain Tumor Walk and Angel Adventure and 821 at the Denver Walk. The
> two walks raised over $1.05 m.
>  
> Tim Erickson from the Victorian Racewalking Club in Australia advised
> that walkers on 12 July covered a combined distance of 437.5 kms and
> raised $750 for the Royal Melbourne Hospital Neuroscience Foundation.
>  
> Peter Bennett from Brisbane, Australia, advised that on the same
> weekend racewalkers in Queensland covered 156 kms and donated the
> funds raised to the Cancer Council Queensland. Peter himself had just
> returned from France where he had come 2nd overall in the Paris-Colmar
> stages race, covering 173 kms in 19 hours 30 minutes. He also won the
> Rouen 24-hour international walk covering a distance of 214.65 kms.
> Peter has donated both distances covered to the World Walk target.
>  
> Matthias Preusser and Christine Marosi and the Viennese Scout Group 42
> (14 participants) each covered 18.1 kms in July and contributed the
> combined distance to the World Walk project.
>  
> Kim Lachut from the UConn Sharing Hope walk reported that their 250
> walkers in June raised $20,000 for the American Brain Tumor
> Association.
>  
> Steve Andrews, President of the SE Brain Tumor Foundation in Atlanta
> reports that a message from the IBTA was read to their several
> thousand participants.
>  
> Trudy Thomas from BTUK advised that walkers in the Jurassic 32
> fund-raising walk donated 343 miles to the World Walk target.
>  
> 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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