Duchenne muscular dystrophy campaigners to petition for funding at Downing Street

 
13 June 2012

Hundreds of people whose family and friends are affected by a wasting muscular disease will today call on the Government to provide funds which could help find a cure.

Families of sufferers of Duchenne muscular dystrophy (DMD) will descend on Westminster to plead for £5 million to help fund research.

The activists are expected to present a petition to Downing Street later today.

They will also march to the Department of Health and lobby their MPs to match the funding already raised for research.

The disease, which usually affects boys, is caused by lack of a protein called dystrophin.

It causes progressive muscle weakness. Sufferers are usually diagnosed when they are toddlers and they rarely live beyond their late teens and 20s.

It is estimated that 100 boys are diagnosed with DMD in the UK each year.

Nick Catlin, head of research at charity Action Duchenne, said: "We are now on the verge of bringing truly ground-breaking genetic treatments for Duchenne to the market and it is a critical time to invest in research for treatments that will see the condition stabilised to enable our young people to live longer.

"There is no doubt that our campaigns and the tireless fundraising of our families and supporters have already made a difference, but without further funding and Government support we cannot achieve our goal of providing personalised care and support into adulthood to improve the quality of life for those living with Duchenne."

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