Action Duchenne
Charity number: 1101971
Website: www.actionduchenne.org
Description:
Action Duchenne is a national charity that aims for find a cure for Duchenne, a severe genetic muscle wasting disease. The condition affects mainly boys with rare instances of girls developing the disease. Children are often in a wheelchair at the age of 10, and by their teenage years many are totally paralysed, and suffer constant respiratory, heart and spinal problems. Without treatment most of these young men die by their late teens or early 20s. Action Duchenne is the leading Duchenne Charity and has spearheaded new research projects, and created the DMD registry a national database to facilitate fast track treatments and clinical trials and has successfully campaigned with the Government to provide greater medical care for those living with Duchenne. This brings new hope and a real possibility for greater quality of life for many young boys. But we still have a long way to go and for many young people it?s a race against time. To ensure we do not lose another generation of young people to this terrible disease we need more funding for research and treatments.
Your everyclick is vital to us. Your donations will be put to new research and to support our campaigns for further Government funding.