Every year, the group grows both in membership numbers and activity and hopefully 2006 will be no different. It promises to be another busy year with our exciting annual conference in May - see update of arrangements planned on page 6.

We hope that you enjoy reading this newsletter and find it both informative and interesting. And remember, it is your newsletter, so please do send us any comments, ideas or articles you would like to see included in the future. You can contact me on w.tollman@btinternet.com.

Conference 2006

This year's AGM/Member’s Forum will take place in Newcastle on 6th May and by the time you read this, the sub-committee of Dawn Searle, Christine Spencer, Alison Simpson and Sarah Nicholls put together to coordinate this event along with the fundraiser will have met for the first time.

A speaker programme is being put into place alongside a crèche and youth programme. The programme will include member’s stories following the success of this session at the 2005 meeting.

Arrangements for the major Fundraising event proposed for the evening are well underway and look very impressive. Christine has been working extremely hard on securing reputable bands and entertainers, to dance the night away to, as well as some very special raffle and auction prizes. Prizes already pledged include signed football shirts, autographed t-shirts and TV scripts to name but a few. There will be a bar at the evening event as well as refreshments available.

The venue, The Federation Brewery, is ideally located close to the A1 (Gateshead/Durham/Newcastle area) and just 15 minutes from Newcastle airport.

Members will receive correspondence on both day and evening events in the coming months. It is planned tohold the AGM/meeting as a separate event to the Fundraiser, as the later event will be open to both members and the general public. Local hotel accommodation will be recommended for members wishing to stay overnight.

If you have not already done so please mark the date of Saturday 6th May on your calendar now and help make this another meeting and a fundraiser to remember.

Sarah Nicholls

Evening Fundraiser

The evening fundraising event is a new and exciting challenge for the HMESG and one, which we hope, will be a great success. Money raised from the evening will go towards future research into HME.

As always, though, we need the help of members to make the evening truly successful. If anyone feels they can sell either some raffle tickets in their local area/workplace or, indeed, a table of 10 seats to friends or loved-ones, then please do not hesitate to contact either Dawn Searle on 01438 861866 or Christine Spencer on 0191 410 9235. Similarly please also contact them if you are able to offer an auction or raffle prize.

So many thanks to you all for your continued support and please do try and come to Newcastle in May if at all possible. We look forward to seeing you there.

Meet The Committee

Continuing our introductions of your Committee members, in this edition we are going to learn more about Barbara Gibbs who is the Secretary of HMESG.

My name is Barbara Gibbs and I am the Secretary of the HMESG having taken over the role from Sarah at the Oxford AGM.

I only became a member of the group in 2003 after my youngest grandson George was diagnosed with the condition and we, as a family, just wanted to do something to be useful. At first I concentrated all my efforts into fundraising but when the group was looking for a new secretary - to release Sarah into another specific role - I offered my services. As Secretary I help the Chair by writing letters of thanks to the very kind people who raise money, I organise telephone committee meetings and the one face to face committee meeting each year, taking minutes for such meetings. I still try to raise money of course.

I am now 66 years old (at least for another 2 months) and am a retired school secretary. My husband is a retired head teacher and plays a supportive role. I have 3 grown up and married children and my youngest daughter is the mother of George. My son is also a keen supporter of the group. My hobbies are being a grandmother, playing indoor bowls, cross stitch, taking part in the annual village pantomime, going on short breaks especially to France and drinking the odd glass of wine! I also organise all the bookings for our village hall and somehow or other have now found myself on the Church Social committee.

Being part of the group committee has proved to be a very pleasant time. Some weeks are busier than others, of course, but I know there is always someone at the other end of a ‘phone with whom I can ask advice, discuss ideas or just chat when on a “down” day. We all work well together and the enthusiasm is very encouraging and how lovely to have made so many new friends.

Hi, I’m Rob Searle aged 15 years. I want to tell you about how for years I have helped my hospital learn more about HME - I’m so pleased that I’m raising awareness of HME while also teaching our future doctors and consultants all about this rare condition I have. Why don’t you do the same? Just ask your paediatrician or consultant at the hospital you’re under. So what do you have to do? Every 6 months or so, my paediatrician asks me if I can help in an examination - it’s a great half day off school and I get paid £10 for doing it. I meet 2 examiners who ask me a lot of questions about the condition and also about my hobbies and problems and they take notes. Then the trainee doctors who are being tested come round and examine me. They have not been told what I have and they have to try and guess. It’s great fun because at the end I get to tell them what I’ve got! Then I hand out leaflets and tell them to go on to the web site to read up about it. Sometimes the trainee doctors do know what I have but I still have to go through my worries, schooling, hobbies etc for them to report back to the examiner as it’s not just the condition the examiners want to know about but how well the doctor communicated with me. I’ve been doing this for years now and don’t mind it at all. I feel as though I’m doing my bit for the Support Group in raising awareness and if just one person later on in life is diagnosed with HME as a result of one of those trainee doctors remembering me then I will be pleased. I hope you can do this too - give it a try, you might even enjoy it and you get to play on Playstations and eat chocolate and have drinks all afternoon. Take care. Rob

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