The International Brain Tumor Association Newsletter
Posted on: 01/13/2008
Dear friend of the international brain tumour community
First may we wish a happy New Year to you and your loved ones.
Thank you to those who completed our recent survey. The results can be downloaded from the IBTA website at: http://www.theibta.org/uploads/file/SurveyReport121207.pdf
WORLD WALK AND AWARENESS WEEK
We were pleased to note the overwhelming support in the survey for a repetition in 2008 of the World Walk and the Awareness Week and have revised the Walk Around the World for Brain Tumours target for 2008 to three times around the World, and have selected Sunday 26 October - Saturday 1 November for the 2nd International Brain Tumour Awareness Week.
So far we have received 54 definite and anticipated expressions of endorsement of this year's activities from brain tumour support, research and professional organisations. We are also seeking support from commercial organisations to cover the costs involved. Again, we remind supporting organisations that the IBTA does not wish to receive any funds raised - they should be directed to local and national brain tumour support and research organisations. If your organisation has not yet processed our request for involvement could you please deal with this as soon as possible, as we wish to undertake printing and translations. Also, could you please create a link to the IBTA website at: www.theibta.org
RARE DISEASES PUBLIC CONSULTATION
The IBTA recently lodged a submission to the European Commission in connection with its public consultation about rare diseases which is available for download from here: http://www.theibta.org/uploads/file/RareDiseases161207.pdf
Chris Tse from New Zealand is kindly maintaining for the IBTA a webpage listing of relevant scientific and patient/caregiver events which may be accessed here: http://www.theibta.org/index.php?page=conferences If you wish to have a conference or event listed please contact: email@example.com
IBTA ON YOU TUBE
The IBTA has established a location on You Tube at: http://www.youtube.com/theibta and the first item uploaded is a message for the launch of Brain Tumour North West in the UK, which includes video of a song by David M Bailey. Permission has been obtained to upload a 20-minute interview with David on Premier Christian Radio during his visit to the UK in October 2007 for the International Brain Tumour Awareness Week. The interview, in three parts, has now been uploaded. It can be accessed but requires further minor editing. We are keen to explore other forms of Internet social networking, including blogs, My Space, Facebook etc to spread knowledge about brain tumours.
With 83 awareness-raising activities in 18 countries during 2007 we wish to commemorate these walks and gatherings in an appropriate printed form which will publicise the involvement of your organisation and the myriad of projects which made up the World Walk and Awareness Week in 2007. The content will be drawn from the reports already on the IBTA website. Please check the relevant webpages and advise any corrections or amendments: http://www.theibta.org/index.php?page=recent-events and http://www.theibta.org/index.php?page=more-completed-activities
SOCIETY FOR NEURO ONCOLOGY (SNO)
Kathy Oliver recently attended the annual SNO meeting in the USA and attached is a report of items which she found of interest. This document has also been uploaded to the IBTA website as a HTML file at: http://www.theibta.org/uploads/file/SNO07ReportKO.htm and as a PDF file at: http://www.theibta.org/uploads/file/SNO07ReportKO.pdf It may be retransmitted within your organisation with appropriate acknowledgement.
Denis Strangman (Chair)
Kathy Oliver (Secretary)
12 January 2008
International Brain Tumour Alliance – IBTA
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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