Muscular Dystrophy, Colchester
Newsletter number 16
August 2004

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Chairman's Corner

I am sure that we will all remember Stan Angier, what he did and what he stood for, but if anyone has any ideas for the branch in order to commemorate all that he did for the group then please let me know. The collection taken at his funeral and given since amounted to 245.

We have just learned about a charity called The Summertime Trust who provide free holiday accommodation to children & families who live near where the funds were raised. We are aware that they have raised funds in our area. If anyone is interested the telephone number is 0870 240 6709.

We have also just heard of Shaw Trust which is designed to support the long term unemployed with disabilities and disadvantages in this area (not outside Essex). Shaw Trust provide assistance and guidance throughout the whole process of finding employment and work closely with 3,500 employers at both national and local level. Anyone interested phone Phil Wilders on 01206 563646 - email: Colchester.project@shaw-trust.org.uk

The new MD website has gone live on www.muscular-dystrophy.org and it contains some interesting information. This includes an advance in gene therapy. Previously a major stumbling block has been the inability to reach all affected muscles. However, recently a micro-dystrophin using a virus together with an agent was delivered into the tail of mice where it circulated throughout the body and the vector moved out into muscle cells where it produced the missing protein. A dramatic improvement was noticed in all muscles including the respiratory and cardiac muscles. Human trials are round 5 years away and if shown to be safe further trials would be arranged. This would mean that it would be substantially longer before a safe and effective therapy for humans may be available.

We have so far had collections at 5 Ways Brightlingsea, 5 Ways Mersea, North Station, 5 Ways Tiptree, , Safeway Clacton, 5 Ways Abbotts Road, Asda and Waitrose with Tesco, Sudbury and Sainsburys Tollgate to come and with a stall at Mersea Lions on August Bank Holiday. We also had the 9 days stall at the Primrose Festival. All this activity means that we are going to have a record year in 2004 but will not be able to repeat it in 2005. The next concert will be on 2 April 2005 at St Botolphs Church so don't forget to mark the date in your diary - it is a wonderful occasion.

So, 2004 will be a record year for income; most of you will be aware that we have to send 80% of the net funds raised to Head Office to help cover their costs and to provide funds for research. What is left over can be used to assist local sufferers in the purchase of equipment etc. and we are now better able to help in this regard than ever before (maximum grants that we are able to make are 250 per case). So, if you are thinking of buying some equipment to help with your illness first of all contact Janet Saunders, our Welfare Officer, who will probably put you in contact with Terry Robinson in the first instance. We will also monitor the position once Janet has been advised and if we can be of assistance then we shall be more than pleased to help. Terri Robinson can not only give you some very important advice but she also has access to funds (much greater than ours).

Don't forget the AGM next March, date yet to be fixed. If any of you are prepared to accept the newsletter by e-mail and help to reduce our postage costs please let me know.

Branch Activities

Amounts raised at the various functions mentioned are:

Primrose Festival 955.54
Primrose Festival Sponsorship 1,905.13
5 Ways Brightlingsea 428.81
5 Ways Mersea 325.55
North Station 359.35
5 Ways Tiptree 251.82
Safeway Clacton 763.40
5 Ways Abbotts Road 227.00
Asda 343.50
Waitrose 536.50

We also receive money from donations, from Maria's Kefir and cards, from Tony & Bridget's organ and from collecting boxes. These collecting boxes are often in pubs, although some are in dentists, garden centres and other venues. So, help us to raise more money by approaching pubs etc. and getting them to allow us to have a collecting box installed; we will do the rest, once you advise us of details. The more money we raise the more we will be able to help sufferers and the more money will be available for research. So, here is the challenge - find us 10 more venues for our boxes before 31st December.

Your Committee

This looks a little healthier now with David Fremlin providing much needed support to me, as Secretary, and with Sue Wood still on the committee, our numbers are up to 7. This is the main reason that we have been able to do so much better this year with fund raising. We would ideally like to have additional support on the committee so, don't be shy, come and join in at one of our committee meetings and see if you enjoy them enough to join the committee (no pressure I guarantee). We have already had 2 new people come to a committee meeting; one we found a little too business like - our committee meetings are relaxed and informal - the other found her time had been taken up suddenly by a family problem but she helps us with our collections. If you have any ideas for fund raising please let us know - new ideas are always most welcome. If you have something funny happen to you (or to someone you know) let us know so that we can let everyone in the branch know and have a laugh with you.

I hope you enjoy all the warm weather we are experiencing and, if you go away on holiday I hope you are able to relax and enjoy the occasion. Whether or not I will get another newsletter out to you before Christmas I don't know so I wish you all a very pleasant and happy Christmas, hopefully with your family and friends around you. I hope to see as many of you as possible at the AGM in March and if any of you would like to tell us about any of your experiences, formally at the AGM, please let me know. Hopefully you will all have seen the Christmas Cards this year - better than any year since I joined MD - if you would like me to order any for you please let me know.

May 2005 be a wonderful year for you and your family and let us hope that that vital medical breakthrough for MD is only just around the corner.

Chris Jenkinson
Branch Chairman, Treasurer and Editor
60, Marlowe Way, Lexden, Colchester CO3 4JP.
Tel: 01206 520986 -Mobile 07973 121073
E-Mail: christopher.jenkinson@ntlworld.com
Website address: http://peter.fremlin.de/mdgroup

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