We now have around 260 members, some of which are individual memberships and some of which are families with many people affected by HME. This means that the actual number of people we are in touch with who have HME is unknown to us, but it is many more than 260!!

When the UK Support Group was set up in 1997 there was little information available about HME. Fortunately this has improved and there are now several HME Support Groups in Europe and America that we are in touch with. At the time of writing, Dawn and I are intending to visit the Dutch Support Group's Annual Meeting in Utrecht on Saturday 5 June. This will be fascinating for us - it is a mixture of talks and workshops - and we hope to bring back some fresh ideas for our next Conference.

Having said that, the Edinburgh Meeting was a great success and it was wonderful to meet so many people and to see them enjoying themselves. Sarah has written a full report inside.

Donations and fundraising have been overwhelming and every week we have cheques coming in with many inspiring fundraising activities having taken place. See page 5 for more details. However, voluntary subscriptions were poor last year and to try and improve this and make things possibly easier for you, we have now introduced a standing order authority which you should find enclosed with the newsletter.

For the future? Perhaps a period of consolidation while we adjust to our rapidly growing numbers and all the extra workload this brings. We are still very keen to raise awareness of the condition amongst medical professionals and will continue to actively research this area to find the best way to achieve our aims. We are looking forward to the next Conference and in the meantime will continue with our important task of supporting those affected by HME.

As always, we welcome comments and suggestions and any offers of help. This is your Group - thank you for all your support!

Have a great summer!

Helen Small

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