Tollgate Hall, Stanway. Saturday, 8 March 2008.
Chairman: Chris Jenkinson. About 30 people were present.
Minutes of the AGM of 2007 and accounts for the year 2007 were circulated. No matters were raised for discussion.
We had a generally good year for fundraising, with a total over £10000. We were able to send £8620 to Head Office for research into cures and treatments, grants for equipment and administration costs. A large part of our income was from participation in the Mayor's Charities. At the end of the year our closing balance in the branch accounts was £5262.79, which we can use to help local sufferers. The maximum we can give on one occasion has been raised to £500.
There will be a national MD conference in September, and some assistance is available for travel costs. The Campaign is trying to help young people going to university and starting employment, including home working. Nine boys with Duchenne's are currently taking part in a trial of a gene therapy treatment. There is now an e-mail newsletter; tell me if you wish to receive it. Locally I am asking the Mid-Essex NHS Trust whether it would be possible to arrange for local specialist consultations so that sufferers will not have to go to London so often.
Last summer two members reported that they booked holidays, were promised wheelchair-accessible accommodation, and on arrival were presented with something unsuitable. Both were eventually able to get full refunds, and a strong letter which I wrote may have helped.
Martin Bennett presented a posy and a gift voucher to Janet Saunders in recognition of her six years' work as Welfare Officer.
Martin [Bennett] has spinal muscular atrophy (SMA) type II, affecting motor cells in the spine, leading to weakness and atrophy in the muscles; Type II is an intermediate form. He doesn't let this stop him and has this year been involved in several exciting projects.
Early in the year he took part in a wheelchair skills programme run by Whizz-Kidz, and they signed him up as an "ambassador". At Easter we went to Butlin's, Bognor Regis, which Martin enjoys because of the range of wheelchair-accessible facilities; while there he met Kirsten O'Brien. In April we were invited to join in a social history project at Colchester Castle, "Beyond the Label"; Martin joined a group of 10 making short films about their daily lives, with advice from a professional photographer, and a sound artist to help with the voice-over. Martin chose a visit to Gt Ormond St Hospital as the subject of his film, with the journey, his exercises and a trip on the London Eye (which has excellent facilities for wheelchairs). The film is now on YouTube.
When Martin was 6 he joined our local Beaver Scout group. Since then he has been to three sleepovers at Thorrington. Last June they had the district fun day and Martin enjoyed the abseil, being lowered in his harness from a 20-ft tower which Les had carried him up. At the end of July there was a sleepover at Colchester Town Hall, though there was very little sleeping; fortunately Martin was able to cram himself and his chair into the lift. Also during the summer Martin was able to get Roy Hudd's autograph at a Butlin's ceremony in Clacton.
In September Martin went to ABN AMRO in Bishopsgate as a Whizz-Kidz ambassador; we were pleased to find that arrangements for the train journey went well, and Martin met Will Carling and Cal Crutchlow. At the end of November, Martin got a gilt-edged card inviting him to the House of Lords, again on behalf of Whizz-Kidz. Les and Martin had to be kitted out in suits and ties. We met Ed Balls and Bob Russell, among others.
Martin's 2008 calendar is already filling up!