Tollgate Hall, Stanway. Saturday, 28 March 2009.
Chairman: Chris Jenkinson. About 30 people were present.
Minutes of the AGM of 2008 and accounts for the year 2008 were circulated. No matters were raised for discussion.
Sadly I have to report the deaths of two of our members, Bob Cardy and Rose Lilley.
In this last year, there have been encouraging advances in research into possible treatments for muscular dystrophy, described on the newly revamped MD website, http://www.muscular-dystrophy.org. Following a successful check for possible side-effects, there is a trial in progress of an exon-skipping treatment for Duchenne's, involving multiple intravenous injections (http://www.muscular-dystrophy.org/research/news/769).
There continue to be difficulties with provision of treatment for neuromuscular disorders in some parts of the country; at present there are particular problems in Northern Ireland. Here in Colchester, however, we now have two NHS consultants, as Mr Etherington is again working for the NHS.
Dates for the diary: the West Bergholt Concert Band is performing on 25 April (St Botolph's Church, starting at 7.30 pm); the Southend Moonlight Colourthon will be on 4 July, starting from Chalkwell Park at 8 pm (http://www.moonlightcolourthon.co.uk/route).
I am preparing a letter for all Colchester surgeries, hoping to make them more conscious of muscular dystrophy, and inviting them to tell patients about us when appropriate. There are surely sufferers in this area who don't know about us. All MD sufferers are recommended to carry a medical-condition card (I have some here) to help any nurse or doctor who may need to attend them.
Remember that if you fill in a membership form you can receive Target MD, with much useful information. Concerning suitable levels of exercise for sufferers, the Campaign suggests a moderate level, so that you are breathing a bit harder but you can still hold a conversation, two or three times a week for 30 minutes if possible (http://www.muscular-dystrophy.org/ about/press_office/statements_and_briefings/892).
The Neuromuscular Centre in Winsford, Cheshire (http://www.nmcentre.com/aboutus.htm) can accept referrals from anyone in the country who is having difficulty accessing physiotherapy and other services; it is a pity it is so far away.
During 2008 we had a disappointing year for fundraising, due to difficulties in arranging store collections. However we still have money to help local sufferers, particularly with equipment; the Joseph Patrick Trust (the welfare trust of the national campaign) can also help.
This year we are again Tesco's Charity of the Year, and we hope to raise a good deal of money for equipment (particularly for children and young people, to be distributed through the Joseph Patrick Trust).
The Campaign is currently funding 27 projects for treatment for 16 types of muscular dystrophy. In particular, Prof. Dame Kay Davies hopes within five or ten years to have a useful treatment for Duchenne's based on using the protein utrophin as a substitute for dystrophin. We are very glad that the US government now allows federal funds to be used for stem cell research.
We campaign vigorously for better services, especially for young people. £1 million has been assigned to such services in the south west of England. We hope to get care advisers in East Anglia, as Terry Robinson used to be, to help sufferers sort out their needs and entitlements. Among Duchenne's sufferers, we know of two in their forties, and two others who have children.