A Mill Hill father will lobby the Government next week to help find a cure for the terminal disease from which his son suffers.
Mark Silverman, 35, of Shakespeare Road, will be joined by other sufferers and their parents as they ask MPs to support vital research into Duchenne Muscular Dystrophy (DMD), which is, at the moment, incurable.
DMD is a severe muscle-wasting disease that affects boys and young men. With no treatment available, few children diagnosed with DMD live beyond their mid-20s, and most are confined to a wheelchair by their teenage years.
The event is organised by Action Duchenne, a registered charity raising awareness and funds for research into treatments and a cure. Up to 100 people are expected to march from Westminster to Downing Street on June 18 and present their case to Prime Minister Gordon Brown for more research funding.
Campaigners will then meet health minister Ivan Lewis to discuss their concerns.
Mr Silverman, whose three-year-old son Thomas was diagnosed last year with DMD, said: "Over the past ten years, levels of funding for Duchenne research and clinical trials have been pathetic.
"The Medical Research Council has spent an appalling 0.3 per cent of its budget on research for all types of Muscular Dystrophy research in those ten years, yet possible treatments for Duchenne remain tantalisingly close. It is totally unacceptable."
DMD affects 2,500 people in the UK and around 40,000 people worldwide. The gene that causes DMD was discovered in 1986, and since then governments have provided £2.2 million of funding for research and clinical trials.
Nick Catlin, chief executive of Action Duchenne, said: "We have made a good start at raising awareness and funding for critical research.
"However, we need to do more and we need Government support and funding. Young people with Duchenne don't have time on their side. We need this research to start as soon as possible so it can really make a difference."
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules hereComments are closed on this article