Dear All
As some of you may remember from an earlier post that my closest childhood friend has a son with Duchenne muscular dystrophy. Ben is three years old, almost the same age as my son, and the same age we were when we played together as kids. My friend has written to me to ask me to send a letter to my MP about some funding for vital research and I have done that. I feel so powerless but realised that I could do something by asking you guys if you had a few moments to send a letter to your MP. The address is already on the letter - and if you don't know the MP's name you can find it here
www.parliament.uk/directories/hciolists/alcm.cfm#W
It took me about 5 minutes from start to finish but if enough people make a fuss it could make a huge difference to my friend's son and many others. I know I'm preaching to the converted here so I'll stop. But if anyone felt able to do this I'd be very very grateful. I'm so technically useless that the only way I can think of putting this on here is to copy it in full and ask you to cut and paste it. You'll also need to personalise it by changing the XXX bits, maybe to a friend's son, or if you prefer and friend of a friend.... If anyone has a problem you can always contact me at [email protected] Please feel free to pass the letter on to anyone you know who may be interested.
Thanks in advance and here's the letter:
Carrie
xxxxxxxxxxxxx MP YOUR Address
House of Commons
London SW1A 0AA
Dear xxxxxx
Last October a research bid was submitted to the Department of Health to fund exciting research which could lead to a possible treatment for Duchenne muscular dystrophy. This bid (submitted to the fund announced in the Government?s White Paper on Genetics for research into gene therapy for single gene disorders) could, in the foreseeable future, lead to clinical trials of this cutting edge genetic technique.
XXXXX's son is 3 years old. With proper funding for this research it is possible that his quality of life could be improved and he may be able to live a vital few years longer.
The £2.4 million bid would bring together a unique consortium of scientists from around the UK. They are all working to develop a genetic ?patch? to bypass genetic errors associated with Duchenne muscular dystrophy in order to restore some strength to the muscles of boys with the condition. The bid has been co-ordinated by the Right To Survive Campaign ? a coalition of three charities: the Muscular Dystrophy Campaign, Parent Project UK and the Duchenne Family Support Group with support from the All Party Parliamentary Group on Muscular Dystrophy. The Right To Survive Campaign is calling for the Government to make £20 million available over the next five years to fund research into treatments and cures for Duchenne muscular dystrophy.
A treatment which could restore strength to weakened muscles would represent an amazing step forward, because at present there is no cure or treatment to prevent the muscle breakdown associated with Duchenne muscular dystrophy. This condition progressively destroys muscles, leading to increasing disability and reduces life expectancy to, on average, just 20 years.
However, there is no guarantee that this particular bid will be successful. The White Paper only allocated an extra £3 million and there will be competing bids for this money.
I am writing to you as my MP to ask you to contact the Secretary of State for Health to urge him to ensure that this research is funded, whether or not the bid is successful. The White Paper set a precedent in providing research funding for specific conditions by allocating £2.5 million for cystic fibrosis research. I hope you will agree that Duchenne muscular dystrophy, the second most common fatal single gene disorder after cystic fibrosis, should attract similar, ring-fenced funding.
In the longer term I would like to ask you to support the Right To Survive Campaign, and specifically the call for an extra £20 million to be invested by the Government for research into Duchenne muscular dystrophy.
Unlike common conditions such as cancer or heart disease, muscular dystrophy does not attract investment from pharmaceutical companies. With no profits to be made from rare conditions, it must be up to the Government to ensure that investment is made.
£20 million is a tiny proportion of overall Government spending, and yet the scientists working in this area believe that this investment could make all the difference in finding effective treatments and even a cure for this condition. Such a breakthrough would place the United Kingdom at the forefront of this developing new technology.
Every year 100 boys die as a result of having Duchenne muscular dystrophy. Ultimately, an extra £20 million for research could lead to a cure saving so many families from heartbreak, and saving huge amounts of money in health and social care costs.
Yours sincerely