Subject: Cavernoma Alliance UK - November 2011 e-mailshot
Dear %%salutation%%
After a long silence since our June e-mailshot welcome to our November e-mailshot bringing you the latest news about Cavernoma Alliance UK.
You may remember that in the June e-mailshot <https://member.cavernoma.org.uk/opus430.html> Alison Garwood, one of our trustees, explained her plans to start reading and reporting back on what was in the BJNN which may be of interest to members. Since then we've posted two round ups to the Members' Area on the web site covering four issues of the journal and you can find those here <https://member.cavernoma.org.uk/bjnn.html>.
We welcome all of our new members especially Tim Millward FCA who is assuming the weighty position of treasurer. Tim assumes the role ably occupied by Jon Anderson for four years. Our board is also swelled by member number 249 from Manchester, Simon Temple.
CA UK membership currently stands at 430. If you haven't visited the Members' Area for a while you are encouraged to do so, and to read and reply to other members' concerns. This is a great opportunity to recommend the cavernoma-chat mailing list, the British forum on the Angioma Alliance website accessible from the Members' Area, and the members only Facebook site where members of the Alliance can chat in real time.
Brana Thorn, the YPC co-ordinator, ably assisted by Frank Gent, trustee, and a band of willing volunteers, ran a YPC at the National Hospital for Neurology and Neurosurgery, Queen Square, sponsored by Roald Dahl's Marvellous Children’s Charity, Paula and Steve Wheeler and Kevin and Paula Cavill. A very stimulating talk was given by Mr. Christopher Chandler, consultant paediatric neurosurgeon, King’s College Hospital, and followed by a discussion amongst parents of young people affected by cavernoma, led by Brana Thorn and Paula Wheeler. Meanwhile, during the morning activities were held for the young people in an adjoining room. Thanks to our sponsors, lunch was provided at the nearby Pizza Express before being taken by private coach to the Science Museum.
You can find a report, with pictures, on our web site here <http://www.cavernoma.org.uk/opus397.html>
Another YPC is scheduled for 14 April 2012.
Ongoing research into cavernoma is an area that CA UK has for a long time wanted to undertake. When an opportunity arose to work with the generous support of Genetic Alliance UK(GAUK) to sponsor a set of clinical guidelines for CCM, CA UK seized the opportunity. Funding was invested in research undertaken by a team at the University of Edinburgh led by one of CA UK's medical advisers, Dr. Rustam Al-Shahi Salman, with additional input by Mr. Neil Kitchen and Dr. Jonathan Berg. (The results of this study will be available for members shortly on the website.)
CA UK's hope is that this important work will benefit the clinical management of current members and certainly assist future generations in the community who are diagnosed with cavernoma.
These CCM guidelines will be presented to clinicians by Dr. Salman at the Angioma Alliance 7th Annual Pathiobiology Workshop in Chantilly, France. (16 – 18 November 2011). Along with our American partners Angioma Alliance and the support of GAUK, CA UK is part-sponsoring this event by offering funds for half a day of the event (The other half of the day is being sponsored by GA UK).
Ultimately these guidelines should translate into clearer information being provided to doctors many of whom are at the present moment resistant to relying on volunteer support groups in the Third Sector. Having been made aware of the condition by recognised neurological, neurosurgical and genetic experts, clinicians and doctors may be more sympathetic to the support and information about the condition which CA UK can provide.
Some of the Events CA UK has been attending.
Did you know that Christmas and greetings cards are available both with and without our logo with some of the proceeds helping CA UK? The Greetings Card Company give 7.5% of any sales (excluding stamps and delivery charges) if you indicate you want them to go to Cavernoma Alliance UK, however if you want your cards branded with our logo you have to opt for personalised cards as they don't stock cards with our logo on as standard. Visit <http://www.greetingscards.co.uk/> for further information.
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