July emailshot

The following text comes from the latest emailshot to our mailing list. To receive future editions sign up here.

In this edition:

  - Members' Stories Web Site
  - angioma-chat Mailing List
  - Regional Hubs
  - Other Newsletters
  - Donations
  - Help at Angioma Towers
  - 2nd International Angioma Alliance UK Forum


Members' Stories Web Site
-------------------------
We've had a lot of new members post their stories on the web site
<https://members.angioma.org.uk> recently 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.


angioma-chat Mailing List
-------------------------
The angioma-chat list has recently burst into life with one of our
members whose 3 year old daughter is having her cavernoma removed
tomorrow and wanted to hear from people who have had the same
experience. She's already had some very useful replies.

This is precisely the sort of thing the angioma-chat list is for so
please do feel free to use it. If you're not a member already go to
<http://the-hug.net/lists/angioma-chat> to sign up.


Regional Hubs
-------------
The regional "hubs" first proposed in a document we circulated to
members in April (see <http://www.angioma.org.uk/opus87/AAUKPROJECT020907.pdf>
(8KB Adobe/PDF)) are coming along and we hope to have four or five
up and running in the not too distant future. We have applied to
Awards for All (a lottery grant scheme) for funding.


Other Newsletters
-----------------
Our sister charity the Angioma Alliance in the US published their
Summer 2008 newsletter last month. It's available to download at
<http://www.angiomaalliance.org/docs/Current_newsletter.pdf>
(584KB Abobe/PDF)

The Genetic Interest Group (of which we are a member) have published
their Summer 2008 newsletter. It's available to download at
<http://www.gig.org.uk/docs/SummerNewsletter.pdf>
(372KB Adobe/PDF)


Donations
---------
We are pleased to report that we were recently given an anonymous
donation which, with Gift Aid, is worth almost £400 to the
charity.


Help at Angioma Towers
----------------------
Ian Stuart, our co-ordinator, now has two helpers working at "Angioma
Towers", both of which are volunteers. David, who contributes 3 hours
twice a week, lives in Dorchester and is a graduate looking for a
teaching job. David then will be a long-term volunteer. And Iris who
lives over the road who will come in once a week.


2nd International Angioma Alliance UK Forum
-------------------------------------------
Saturday June 7, 2008, was for many of us UK members the high point of
the year. The board and I had spent twelve months lining-up speakers, 
having meetings, arranging hotel accommodations, having meetings, 
visiting venues, having meetings, competing for that most unfortunate 
of things, money, having meetings, ensuring members were informed 
about the event - the 2nd International Angioma Alliance UK Forum - 
and having meetings. The only thing it seems we did not have a meeting
about was the weather - and here seemed little we could do about that 
(although I seem to remember hearing something a few years ago on the
radio about Paul McCartney and dry ice attempting to change the 
climate before a concert in Russia).

Finally the weekend that we had been planning for so long arrived. 
Angioma Alliance UK had asked four speakers to present. And they were 
all there, bang on time, and, considering their eminence in the field,
this in itself was a remarkable achievement. Dr. Connie Lee of our 
parent organisation the Angioma Alliance spoke first on Coping with 
Cavernoma. Mr Neil Kitchen, consultant neurosurgeon at the National 
Hospital of Neurology and Neurosurgery, Queen Square, spoke on 
cavernoma surgery and resisting temptation. From the United States 
came the keynote speaker Professor Issam Awad updating us on cavernoma 
research. Mr. Ian Sabin, consultant neurosurgeon, at Barts and the 
London NHS, spoke on Gamma Knife Surgery and Perfexion, the latest in 
gamma knife technology for brain lesions. At its height, the Forum 
attracted 100 people. The afternoon was dedicated to small informal 
group discussions including a group for carers.

Ian Stuart