Tollgate Hall, Stanway. Saturday 26 April 2014.
Chairman: Chris Jenkinson. About 25 members were present.
I was very saddened to hear of the deaths of three young children with SMA. There is no report of any contact between the family and a support organisation, and while they were not short of money it may be that they could have been helped. We can hope also that genetic engineering techniques will some day make it possible for at least some carriers to have children which they would otherwise have avoided. There are however great difficulties in relating ailments to their genetic causes. The development of treatments is also extremely expensive, and relatively rare conditions such as MD will always have to rely in part on private funding.
I circulated the
2013 accounts by e-mail. Recently Head Office have laid out a new Branch
Constitution, and we now have to support all our welfare expenditure with
Branch Welfare forms. We are also limited in what we are allowed to
carry forward from one year to the next; the limit is £2000 on December
31, though we can have more if expenditure has been approved but not yet
spent. This particularly affects the No 2 account, where we have a
regular income of £6000 p.a. from the Colchester Children's Charity Appeal
which can be used only for children and young people under 18. The
closing bank balance of £8253.82 on this account was acceptable only
because £8000 has been committed. It seems possible that the problem will recur. So I hope that every parent with a child in this group will
look at what the child needs (even if not connected with their illness)
and try to tell us what is needed before September.
As for the general account, we are largely dependent on store collections, and we are most grateful to our collectors.
The following were elected for the coming year:
Trophos have announced promising results of a clinical trial of olesoxime for SMA. We are particularly happy because Martin Bennett was one of the participants in this trial (you can see his story at http://www.jtsma.org.uk/article1217.html) and we thank him for doing this.
The East of England Muscle Group will be meeting in Colchester on 16 June. Our local advocacy ambassador is Sarah Thompson. Branches are asked to set up Facebook and Twitter accounts.
I am director of clinical services at J's Hospice. This is a hospice for young adults (16-40) with life-threatening diseases. Most of our income is from fundraising. Three and a half years ago we got Care Quality Commission approval and we now have five nurses, six carers and several complementary therapists helping 115 families across Essex. We try to help our young people to lead full lives in all ways, whether by maintaining a hoist or showing them how to join in with music. We aim to assign each client permanently to a nurse. We hope sometime to extend our services to be available 24/7.
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