NEWSLETTER NO. 22, December 2008


Your Chairman and committee wish you and your family a very Merry Christmas & a Happy New Year -- is it really 2009 in 4 weeks time?  We are pleased once again to send MD sufferers a Christmas cheque for £20 & we hope you enjoy spending it.

There is to be a change in your committee shortly; Gina Clementson obviously enjoys her work as Welfare Officer, so much so that she has volunteered to become Treasurer as well.  It will still leave a duplication of duties (Gina will still continue with the Welfare Officer position) but will mean that your Chairman no longer has the dual role as Treasurer/Chairman.   Whilst I have been happy to deal with both roles for a number of years I have always been aware that having someone combining those 2 senior roles is not the best model for a charity.

Martin Bennett continues to gallivant around the country and has even managed to get himself on TV -- appearing in Lazy Town -- how Jill manages to find the time to take him everywhere she does I just don't know. Peter Fremlin has been travelling the world, it seems, appearing in a number of different countries over the last year and getting into a few scrapes that have turned his parents hair grey.

2 dates for your diary -- AGM at Tollgate Hall on 28 March 2009 -- if anyone wants to come and does not know where the hall is I can soon explain to you.  If anyone wants to come but needs a lift let me know and I will see what I can arrange.  If you have not attended before please try to attend in 2009, you will be made most welcome.

The concert by West Bergholt Concert Band will be on 25 April 2009 starting at 7.30pm.  Again, if anyone would like to come but needs a lift let me know & I will see what we can do.  The Mayor and Bob Russell will attend.

The Disabled Workers Co-operative ( has a database on which disabled workers can advertise their skills.  


This year has been the most difficult for many years for raising money, particularly in getting stores to let us collect at their premises.  As I type this report we have raised just under £4,900 this year, considerably down on any year since I became Chairman. In fact collections have raised less than £2,000 this year and we are indebted to Ian Randles for raising the magnificent amount of £1,480.50 to boost our funds this time around.  Pamela Goldberger is also to be congratulated on raising £200 at the Moonlight Colourthon. Maria has again broken the £500 barrier with her Kefir which is still an excellent money raiser despite Maria believing that it was winding down some 12 months ago.  It is to be hoped that we shall have more luck with the stores in 2009 and we are actively looking to try some new venues; one such new venue in 2008 was at the Range in Colchester, raising £296.58.  


Most of you will know that we have to send 80% of the funds raised up to Head Office so that they can continue to provide the services that they do and can also continue with the excellent research that is going on as I type.  Early this year we managed to persuade Head Office to increase the amount that we can issue as a grant to our members from £250 to £500.  This has enabled us to spend nearly £2,000 in Welfare Payments this year.  Of course, paying out this much in a year when we have raised rather less than usual has resulted in a deficit this year but we have ample funds stored up from previous years to be able to absorb the shortfall.  Currently we have just over £3,000 in our savings account but may need to move some of that into the current account in the New Year.

Earlier this month the Muscular Dystrophy Campaign and leading clinicians met with Health Minister Lord Darzi.  He has been leading the Government review on the NHS and offered to work with the Muscular Dystrophy Campaign to improve access to specialist care and implement standards of care for all neuromuscular conditions.  This initiative, if it comes to fruition, is well overdue but I would not put any money on it being successful, especially in the current financial situation.

Muscular Dystrophy Campaign-funded research has improved gene therapy in a mouse model of Duchenne muscular dystrophy. The research by Professor George Dickson's group at the Royal Holloway University of London means that gene therapy is now a more feasible treatment for Duchenne muscular dystrophy.

The Human Fertilisation and Embryology (HFE) Act has now passed into law. The Muscular Dystrophy Campaign pushed hard for the Act as it means the UK can maintain its position as one of the leading countries in embryo research, ensuring that the research conducted is subject to the highest level of regulation. You can read our full statement on the Act online.

There are still a few tickets left for our Spirit of Christmas Concerts this December (our nearest is at Chelmsford Cathedral).  There are 11 concerts taking place across the UK to celebrate the festive season and raise money for the charity. Please email the regional team for tickets and more information.

The Muscular Dystrophy Campaign is calling on golfers to tee off together for our 20 Million Yard Marathon in June 2009. You have the chance to be part of a once-in-a-lifetime attempt to play over 20 million yards of golf in one day, while raising money for the fight against muscle disease. For more information contact the events team, through me, if you wish.

If you search the internet you could raise funds for the Muscular Dystrophy Campaign at NO COST TO YOU and help us win the Everyclick charity challenge. The charity that gets the most supporters using Everyclick wins a free nationwide advertising campaign at 1,500 locations across the UK. You can get searching with Everyclick here:


Whether you're a seasoned runner or a beginner, taking part in an overseas marathon could prove to be a fresh and exciting challenge for 2009! We have a number of new opportunities available, so if you or someone you know would like to take part please contact the events team for more information.  Fancy something a bit more extreme than a road race? Then take a look at our full list of Worldwide Ultra Marathons.

My grateful thanks go to everyone who has helped this year and in previous years to make Colchester a successful branch of Muscular Dystrophy.  Please keep up the good work ~V we need all the help that we can get.  In this regard, can anyone help with a collection at Morrison's, Ipswich on Friday January 23 2009 and Saturday January 24 2009 (we shall be indoors).  Please let me know if you can help.


  • Chair/Treasurer: Chris Jenkinson, 60 Marlowe Way, Lexden, Colchester CO3 4JP; 01206 520986;
  • Secretary: David Fremlin, 25 Ireton Road, Colchester CO3 3AT; 01206 767746;
  • Welfare: Gina Clementson
  • Committee: Maria Fremlin (, Beryl Leeks, Jan Jarman, Janet Saunders, Patricia Stewart                (