Campaigners for research into muscle wasting disease lobby Parliament
Campaigners seeking to raise awareness of a severe muscle wasting disease took their fight to Westminster last week (16 June).
Amongst those lobbying Parliament were Sue Berry of Angmering and her son Matthew, aged 13, who is affected by Duchenne Muscular Dystrophy (DMD).
Sue and Matthew Berry were met at the House of Commons by Arundel & South Downs MP Nick Herbert.
Over 200 supporters of Action Duchenne's 'Race Against Time Campaign' travelled to London to lobby their MPs and deliver petitions to the Department of Health and 10 Downing Street to highlight the need for funding to support ongoing efforts to find a cure.
DMD is a muscle wasting disease that only affects boys. There are about 1,500-2,000 known boys with the disorder living in the UK at any one time. DMD affects one in 3,500 males, making it the most prevalent of muscular dystrophies. The average life expectancy for patients varies from the early teens to mid 30s, although there are cases of some people living longer.
Matthew Berry was diagnosed with DMD when he was four and is already a seasoned campaigner, giving his first newspaper interview at the age of seven to help promote Jeans for Genes. Matthew speaks to medical students at Sussex University every year and has also appeared on TV in support of his local children's hospice, the Chestnut Tree House near Arundel.
In 2007, Matthew was a winning finalist in the Muscular Dystrophy Campaign's Inspiration Awards in recognition of his campaign work and support for younger boys with DMD.
Mrs Berry commented: "Duchenne Muscular Dystrophy is a devastating genetic muscle wasting condition which leaves our sons facing total paralysis and early death. Every year in the UK a hundred boys are born with this terrible condition. This could be anybody's son. It could be your son.
"The research into a possible treatment for DMD is at a very exciting stage. There is a treatment that could radically slow down the severity of the muscle wasting and give our sons a much longer and better quality of life. It offers real hope to Duchenne sufferers and their families. But we urgently need Government funding to maintain the UK's lead in current clinical trials.
"I am delighted that Nick Herbert MP was able to meet us at the House of Commons. He has already met my wonderful son Matthew on a number of occasions and fully understands why we are all working so hard to ensure that a treatment is found for this disease."
Nick Herbert commented: "I was delighted to meet up with Sue and Matthew again during their lobby of Parliament. They have both worked incredibly hard to promote the campaign for further research into Duchenne Muscular Dystrophy. DMD is a devastating disease that affects many families in the UK and I do hope that better treatments can be found. They could make a real difference to the quality of life enjoyed by young people like Matthew."
Notes for Editors
1. For more information on the Action Duchenne campaign, visit http://www.actionduchenne.org/.
2. For further information on Duchenne Muscular Dystrophy, visit http://www.muscular-dystrophy.org/about_muscular_dystrophy/conditions/muscular_dystrophies/97_duchenne_muscular_dystrophy.