Funds plea goes to Westminster

Heidy and Paul Ackroyd with their son, Edward

A DENSHAW couple will travel to Westminster today to demand more money for research into a muscle-wasting disease which claims the lives of most of its victims before their 25th birthday.

Paul and Heidy Ackroyd, whose son, Edward, suffers from Duchenne Muscular Dystrophy, will join hundreds of other parents from across the UK in calling on the Government to pledge more money for research into the disease, which often leaves sufferers wheelchair-bound from a young age.

Mrs Ackroyd said: “There are some very encouraging drugs trials going on at the moment, but while the Government has given some financial support, the majority of the funding for all this has come from charities such as Action Duchenne.

“We need more funding to help keep all these trials going and to support even more research, because there are many encouraging projects taking place which could lead to a breakthrough.”

Five-year-old Edward, a pupil at Delph Primary School, was diagnosed with the condition in May, 2007, and since then his family have tirelessly campaigned with Action Duchenne to help to bring hope to him and the 3,500 boys and handful of girls across the UK who are battling the disease.

Supporters of the charity are asking the Government to allocate £30 million of funding for new research and clinical trials, including further development of pioneering gene research known as the Exon Skipping trials, which are looking at ways of overriding faults in the dystrophy gene.

Mrs Ackroyd said: “I know that while Edward is doing well now, it might be too late for him to avoid living his life in a wheelchair, but these treatments could come in time for other children to avoid it.

“If Edward doesn’t get this drugs, then his lungs and heart will eventually pack up. With so many Duchenne drug trials going on at the moment and the prospects of getting a cure being so much better than a few years ago, it can be tempting to stop lobbying, but we can’t ever stop fighting.”

The supporters, many of whom, like the Ackroyds, will arrive in Downing Street with letters of support from their local MPs, are also asking the Government to ensure that people living with the disease have a centre of excellence within 50 miles of their home.

The centres help people living with Duchenne Muscular Dystrophy by providing facilities such as physiotherapy, but there are currently only two in the UK, one in Newcastle and the other in London.

Nick Catlin, chief executive officer of Action Duchenne, said: “Action Duchenne’s work through the Race Against Time campaign was instrumental in bringing together scientists and researchers and two other charities to raise awareness and funding for critical research.

“However, we need to do much, much more.

“The results of clinical trials have been extremely promising, but we urgently need that crucial research to continue.

“For this we urgently need Government support and funding.

“The young people with Duchenne don’t have time on their side. We need this research to start as soon as possible so that it can really make a difference.”

For more details, visit the website www.actionduchenne.org  or ring 0208-556 9955.