From the Chair | Conference 2006 | Weekend Away & Youth Section | Fundraising

2005 - another successful year for HMESG

As we begin a New Year, it seems appropriate to look back and take stock of the many exciting things accomplished in 2005 as it was truly a very successful year:
  • Family and individual membership increased and awareness of HME continued to be raised in many circles. For example, the HMESG had an information stand at the Paediatric Limb Reconstruction Service, Sheffield Children's Hospital Family Fun Day which proved to be most successful.
     
  • The Member's Forum/AGM in Oxford in April was highly successful, thought-provoking and well attended.
     
  • A research database totalling some 100 names of people willing to take part in future HME research projects has been compiled.
     
  • April saw the formation of a youth sub-section of the group, designed to cater specifically for the needs of our teenage members.
     
  • Successful fund raising activities not only boosted finances but also secured vital equipment for the group including a computer and photocopier.
     
  • A highly successful and enjoyable family weekend (see report here).
I hope that all of the above makes you realise just what a successful group you are a part of. Please continue to give your support and hard work and let's make 2006 an even better year.

Announcement
We are delighted to announce that Mr Christopher Biggins has agreed to become Patron of the HMESG. Chris is a well-known and respected actor whose career has spanned many years and whose credits include theatre, pantomime and television work. Chris is particularly known as a family entertainer, starring in both children's and adult productions, which is particularly appropriate given the family orientation of the HMESG. He is keen to help our group however and whenever possible and the backing and support of such a high-profile personality will undoubtedly be of tremendous benefit to the HMESG.

From the Chair

Many of you will know that I came into the HME community through my son who has a spontaneous case of the condition. He is now 17 years old, was diagnosed at eight months and has had numerous operations. My motivation for setting up the HMESG nine years ago, with two other parents, was his future. I wanted him to feel informed, supported and not alone. All too soon, the time has come when he is asking what the chances are of him passing on HME to his children and he was surprised to hear they are quite high (50%). However, I backed up this figure with the news that I had just spoken to a lady who has HME and had chosen to have prenatal testing to determine whether her baby had HME. I was also able to relay the story of a chap I know with HME who has three grown up children, none of which are affected with the condition and it therefore terminates with him. How glad I felt that I was able to have this conversation with him, having been told 16 years ago that we would probably never meet anyone else with HME as it was so rare (1 in 50,000).

We spend considerable amounts of time in the Group trying to raise awareness of HME and to provide information about it. Even though we know that exostoses do not necessarily stop growing after you stop growing (overwhelming show of hands at every meeting we have!), this cannot be supported until a research project has taken place and a scientific paper published in the appropriate medical journal. We have a long way to go!

At the last HMESG Committee Meeting, it was decided that we are now in a position to be effective in the field of research and to this end we have opened a Research Account with a generous donation bequeathed by Mrs Mary Anne Higgins (Nan) for which we are truly grateful and thank Nan’s family for their support. In May we are holding a BIG fundraiser and all proceeds will go into the Research Account. In the next few months we will need to investigate how we can become involved in research and hopefully start to make a difference. We will be holding our annual meeting in May this year and I do hope that many of you will join us.

Best wishes

Helen Small, Chair

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Last updated 10 June 2007
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