Subject: Cavernoma Alliance UK - May 2011 e-mailshot
Dear %%salutation%%
Welcome to our May e-mailshot bringing you the latest news about Cavernoma Alliance UK. This e-mailshot includes some important news of changes to the members' area and two requests for help.
We have changed the security on the members' area moving from having one username and password for everyone to each member having their own username and password. Please visit <http://www.cavernoma.org.uk/password.html> and enter the email address we have recorded for you i.e. %%email%% and we will email you your new username and password. If you forget your password at any time in the future you can visit that page again and get a new password. Please do not contact us asking for a reminder of your password: we genuinely don't know what password you have been allocated.
Paul Oldham, who manages our web sites, is looking for one or two volunteers to help with some of the simpler day to day tasks involved: specifically updating the news from partner organisations, and adding and updating members' stories in the members' area. You will need a computer with broadband access and a phone next to it and training can then be given over the phone. Thereafter we will email you items to be posted and you will put them online when you've got time. No previous experience is necessary. If you are interested please email Paul at <webmaster@cavernoma.org.uk>
Genetic Alliance UK, a group of which Cavernoma Alliance UK is a member, is launching a recruitment campaign for an innovative and exciting research project about new medicines.
They are looking for people who are affected by a severe, rare or genetic condition, to take part in a Citizens’ Jury later this year. They are looking for up to 16 individuals to form a diverse jury that will deliberate a very important issue - the risks and benefits of new medicines. Not only will jurors get their voice heard in an innovative and high profile way, but they will be paid for their time too!
So if your cavernoma has a genetic basis then you may be interested in getting involved. There is further information available about the project on the Genetic Alliance UK website at <http://is.gd/z9fT6I> including a short explanatory video clip and an online questionnaire for people to register their interest.
We now have online Mr Kitchen's slides from his talk titled “Why cavernoma surgery is sometimes not such a great idea!” which he gave to an audience of over fifty people at the National Hospital for Neurology and Neurosurgery during Brain Awareness Week. You can find them here <http://www.cavernoma.org.uk/opus347/NK_cavernoma.pdf> (Adobe/PDF, 1.2MB)
…and finally, by now you should have registered for the 5th International Cavernoma Alliance UK Forum. If you haven't, please register by the end of May at <info@cavernoma.org.uk>. This conference will be held on Saturday 4th June 2011, beginning at 9:00am promptly in the Orion Suite, Grange Holborn Hotel, 50-60 Southampton Row, London, WC1B 4AR. This free event will include speakers, lunch and informal workshops (details of which can be found on our website). Please come along. You won't be disappointed. It is your Alliance. More details can be found here <http://www.cavernoma.org.uk/forum_2011.html>
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