United Kingdom

What is in a name?

Back to United Kingdom forum
Back to forum index

<-- Newer
Older -->

17th August 2008

Dear Members of Angioma Alliance UK,

Angioma Alliance UK has been established for just over three years. We have about 150 members (pathetic really as the condition affects so many people), and, contingent upon funding, we have now secured a date for what is rapidly becoming an annual event - the third International Forum of Angioma Alliance UK, to be held on the first Saturday in June, 2009. The venue, which worked so well this year, will be used again for our 2009 Forum, the Grange Holborn Hotel. And so "save the date." (Hopefully, we will fill the Orion Suite next year.)

Quite some time ago, I remember speaking with our Medical Adviser, Mr. Kitchen, who believes that we should have the charity's name more accurately reflect the medical terminology for the condition in the UK. (I do not want to see Angioma Alliance UK have to adjust its name mid-stream as it were. [It cost 250,000 for the Spastics Society to change their name to SCOPE.])

So the Board of Angioma Alliance UK have unanimously agreed the name Cavernoma Alliance UK. ("Cavernoma" being the more "commonly-held" medical term; "Alliance" a link with Angioma Alliance in the USA; and "UK" for two main reasons. 1. The Board agreed last year that, due to the number of memberships from abroad, overseas members be admitted to join as "associate members" still having all the "rights and privillieges of full membership." So our new name shows that the charity is UK-based and, therefore, dealing, primarily, with UK issues. 2. Cavernoma Alliance UK opens the way for other European countries to establish a charity. (For example, Cavernoma Alliance Italy or Cavernoma Alliance France.)

Paul Oldham, Angioma Alliance UK's webmaster, to whom I remain indebted, has requested that if a member is, or knows of, a graphic designer who would donate their time, to assist him, that would be appreciated. (Contact Paul care of info@angiomaalliance.org.uk ). Paul also posted the news on the website this week that the BMA have provided us with 750 for information sheets. This donation is perfect timing as only a few sheets remain and re-printing at this time will allow us to have our new name on the information sheets. The sheets are being re-drafted by Dr. Rustam Al-Shahi Salman, from Western General Hospital, Edinburgh, Scotland, whom many of you may remember from our first conference. Dr. Al-Shahi Salman is preparing two leaflets: one for asymptomatic patients and one information sheet for symptomatic patients.

Please send me your thoughts on the name-change by the end of August, 2008.

Angioma Alliance UK
Hi Ian,

are we still looking for a graphic designer - if so I can ask some friends who may be able to help. What would they need to do? Best,

Has anyone here ever met Ian?  This man can turn your mind in two, into and in too.  Fold your doilies away forgo the malted vinegar for a moment.  Your doubts about chatting up a guy with a spotty brain are firmly denied.

It was my pleasure to have met Ian at the Angioma Alliance conference in San Francisco, albeit brief, and aside from his British garb, our conversation was intriguing and insightful. If you aren't aware of the conference, it was the weekend the of the "newest deal", Obama for Ian.  

Cavernoma Alliance or Angioma Alliance - it as all the same in the brain.  But when the "cavernoma" doesn't alert me on spell-check, I will know it is the real-deal.

Some our .5% don't fall into the norm - think of how cool you are now?!

Lots of love.

Hello Ian from Florida USA

Go to the Angioma Alliance Community Hub

Go to the Angioma Alliance Forum

Go to the Angioma Alliance website