Our Co-ordinator, Ian Stuart, heard last month that we were to receive £750 from the British Medical Association (the doctors' professional association) to cover the cost of information sheets, posters including the cost of posting them to consultants.
Angioma Alliance UK have applied for two grants: the Gerald Micklem and Dorothy Holmes Charitable Trust, who may provide Angioma Alliance UK with funds of about £1,000 a year for three years. The latter fund is especially for charities in Dorset. So we stand a chance.
We have also applied to Awards for All, part of the lottery fund, for £8,000 for a grant specifically for a project entitled “Cavernoma: Hubs in the Community”. More on this below
Finally The Garfield Weston Trust, The Trusthouse Charitable Foundation and the BMA are all considering grant applications for the London Forum 2009.
Regional hubs is a project first thought of by our now-retired secretary Ros St. Clayre. Ten regional hubs would operate around the UK giving members access to local speakers: specialised nurses, neurologists and neurosurgeons. Mr Neil Kitchen, our senior medical adviser, and consultant neurosurgeon at the National Hospital of Neurology and Neurosurgery, Queen Square, has said that he will help us find doctors for the hubs. The current proposed locations for hubs are East and West London, St. Albans, Oxford, Cambridge, Exeter, Birmingham, Sheffield, Manchester and Scotland. More details - and a plea for regional co-ordinators - shortly.
It is with great sadness that I report the death of Ron Davis. Ron died at 5am Monday 8 September 2008 peacefully at the Joseph Weld Hospice, where we had met, as volunteers, some five years before. Ron served as treasurer of Angioma Alliance UK since its inception in July 2005 and, along with Ros St. Clayre (honorary secretary) and myself, was a critical player in the charity's formation.
By Christmas 2007, Ron's cancer was spreading and he felt unable to execute his functions as treasurer in the manner he would like. Ron was a stickler for precision and timing and often, over a baked potato at Potters Cafe, a favourite haunt, he would catch me out on some minor detail making me appreciate the full implications of my decision.
Even though he stood down as treasurer, until the end Ron remained on the board advising and recommending. One of the elements that I learned from him was more board collective responsibility.
A quiet and thoughtful retired headmaster, Ron will be sorely missed by everyone who knew him. He will be a hard act to follow.
Ian Stuart
Thanks to Ramin Nakisa videos of three of the four talks from the Second International Angioma Alliance UK Forum are now available.
You can view them online at <http://www.angioma.org.uk/opus102.html> or, if you want a rather higher resolution version for watching on your DVD player we can offer them on DVD at a suggested price of £5. Send a cheque made payable to “Angioma Alliance (UK)” to the office at 2 St Helen's Road, Dorchester, Dorset, DT1 1SD. Don't forget to tell us the postal address to which you want the DVDs sent.
The Third International Angioma Alliance UK Forum will now take place on Saturday 13 June 2009 at the Grange Holborn Hotel (as one speaker could not make the 6th).
Helmut Bertalanffy, professor of neurosurgery, at the University Hospital of Zurich, will be our keynote speaker this year – a physician that Dr Robert Spetzler of the Barrow Neurological Institute, Arizona has described as “the best vascular neurosurgeon in Europe”.
Mr Kitchen has been so good to us that the charity is now appointing him as our Senior Medical Adviser. We also have managed to capture Dr Rustam Al-Shahi Salman, consultant neurologist at Western General Hospital, Edinburgh in Scotland. Members may remember him as the neurologist who opened our first forum. Dr Al-Shahi Salman has accepted the position of Medical Adviser.
Both Mr Kitchen and Dr Al-Shahi Salman will speak at the Third International Angioma Alliance UK Forum.
Since our last emailshot we have had another seventeen new members post their stories on the members' web site <https://members.angioma.org.uk> and as of yesterday we now have precisely 150 stories online. Plus there's been some updates by existing members so if you've not been to visit for a while you might like to do so. If you've forgotten the username and password then drop me a line.
One of our members, Wendy Dring, and her family were featured in The Sun recently and this sparked a discussion on the angioma-chat list about what people with cavernomas can and can't safely do. It seems that it's not as straightforward as you might think and on our long list of “things to do” is to try to build up a definitive page on this which we'll post on the web site.
If you want to join the angioma-chat list go to <http://the-hug.net/lists/angioma-chat> to sign up.
We recently had an exchange of email with a new member who was asking some good questions about how secure the data you give us is. As a result of those emails we've created a new page on the public web site explaining how we work and how your data is secured. You can find it here <http://www.angioma.org.uk/data_protection.html>.
Mr. Kitchen, our senior medical adviser, has agreed to run the 2010 London Marathon partly for us and partly for the National Hospital's Foundation Trust.