Dawn Searle Dawn has been doing some detective work into Disability Living Allowance (DLA) and hopefully we will have all the details by the next newsletter. Also as part of Dawns fund- raising she would like all the youngsters out there to design a T-shirt for the HMESG. We need something bold and bright, and to cover the front part of a plain white T-shirt. Do any entries on an A4 piece of paper and fill it with whatever you think appropriate, but remember to use the HMESG logo and don't forget your name, address and age. Please send all designs to me and I will forward them onto Dawn. If we get enough entries there may even be a prize for the best one and hopefully it will eventually be turned into a T-shirt.

Dawn also wants to know if there is anyone who would like to go to a charity live music event in aid of HME. It is taking place at The Robin Hood Public House, Walkern on Saturday 19 August 2000 and tickets are £15.00 each. It starts at 3.30pm and the open-air events end at 9.45pm. There are limited tickets and Dawn has said to contact her on telephone number 01438 861473 for tickets, accommodation and any further information.

Contact a Family CaF is a charity founded in 1979, dedicated to helping families who care for children with any disability or special needs. The HMESG are affiliated to CaF.

CaF have recently reached agreement with NHS Direct Online to link their site, and the rare disorders content of the CaF website. This is great news for raising awareness of rare disorders and providing information.

Maria Fraser, Research Nurse Maria's funding has now sadly come to an end. She tells us that for those of you who had DNA testing, the results will be available by the end of October 2000. We would like to thank her for all her involvement with the Group. She has been wonderful! We wish her lots of luck in her new venture.

Lorne Lonie Lorne is a scientist at the NOC working in DNA analyses. He will be starting research later this year, into identifying other genes that might be linked to HME.

American HME Support Groups In February they joined forces and The MHE (multiple hereditary exostoses) Coalition was formed. You can visit their website on www.geocities.com/mhecoalition/. As well as the one list email support group where you can be in contact with other members through email on a daily basis; there are also "chat nites" which are like conference telephone calls using email. You can get details from the website. Please let me know if you have used these facilities and any experiences or comments.

Next: The Kids Bit
Previous: Days Like Today
Back to: Newsletters