Subject: Welcome to Cavernoma Alliance UK
Dear Potential Member of Cavernoma Alliance UK
Please forgive me for contacting you in this generic way. Every member is important to our charity and the fact that you responded means that you must have an interest in our group.
One of the things our members find very useful is reading about how other members cope with their condition so we ask each new member to give us a short paragraph or two about your relationship with cavernoma to be placed in the locked members' area on our web site. This is a secure area (see this page <http://www.cavernoma.org.uk/data_protection.html> for more on our data protection policy) and your medical details and email address will only be available to other members however if you are concerned about placing your medical history in our locked site then you can use a pseudonym and a separate email address (using <http://gmail.com> perhaps, which supports forwarding to your real email address).
We have had a variety of entries from a few lines to five pages (with photographs!). Your entry can be updated at any time simply by emailing us an update and you will see when you have access to the members' area that some members have updated their stories many times.
An authorisation needs to be attached to every story - “I authorise Cavernoma Alliance UK to place my medical details and email in the locked members' area” - this needs to be in your real name.
Once we have your story then by return we will send you information booklets written by a neurologist and a username and password for the locked members' area.
There is no charge for any of this but as a charity we do rely on members' donations and their local fundraising. In the past, members have been generous in financing the charity and with that funding we can run the web site, create information packs, educate the public and the medical profession about our condition, and organise regional and national conferences to which you will be invited as a member of the charity. This includes the annual International Forum, details of which can be found here <http://www.cavernoma.org.uk/forum_2011.html>
I look forward to receiving your story but if you decide not to go ahead then please let me know that you are no longer interested in receiving any correspondence.
Ian Stuart Ph.D
Founder Member and Co-ordinator
Cavernoma Alliance UK
http://www.cavernoma.org.uk