| |
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 interned 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@theibta.org
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, Lifes 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.
|
