Tollgate Hall, Stanway. Saturday, 18th March 2006.
Chairman: Chris Jenkinson. About 30 people were present.
Minutes of the AGM of 2005 and accounts for the year 2005 were circulated.
As expected, we raised less money over the past year than in 2004, due primarily to the absence of income from the Primrose Festival. However our total income was £7136, the largest component (£3273) being from store collections. We have for the most part stopped contributing to fetes as store collections yield more for less work. We put on two concerts, the West Bergholt Concert Band in April and Nostalgia in October, which raised £651 and £195 respectively net of expenses. Among our regular sources of income, collection boxes raised £409, Maria Fremlin's kefir culture raised £604 and her cards raised £62. Many raffle prizes have been donated by Gina Clementson. We sent £5700 to head office, but still have over £2000 available for local sufferers; in addition, the Joseph Patrick Trust can help.
My son Ben has Duchenne's muscular dystrophy; we know that we must expect steady degeneration of all muscles, leading to his being permanently in a wheelchair within five years, and probably dying in his twenties. He has a lot of living to do first! We had to argue with Essex County Council to get assistance in a mainstream school, but he now has a full-time assistant. He has daily physiotherapy, with night splints and steroid treatment. We were very fortunate in getting help for a family visit to Florida. Ben is still relatively mobile and we just had to borrow a wheelchair at each park we visited. I did a sponsored run for Parent Project UK, the Duchenne's charity, and raised about £3500. A lot of research is being done, and two possible approaches for the future are gene therapy (to patch over the fault in the dystrophin gene) and injection of dystrophin, which at present is usually rejected by the recipient's immune system.
I want to thank the Colchester branch for their efforts, contributing to the Muscular Dystrophy Campaign's work in research, family care and information services. There are slow but steady improvements in care for Duchenne's sufferers; in particular, steroid treatments are better than they were; and in Sweden sufferers now reach 27 on average. Girls occasionally suffer from Duchenne's, and some mothers also have a mild form of the condition, normally not life-threatening. Recently we have been involved in the case of baby MB (who has spinal muscular atrophy), and prepared a press release.