The Northern Ireland Assembly at Stormont will be the destination Wednesday, June 8, 2011 for boys with Duchenne muscular dystrophy, their families and supporters. They will be lobbying MPs to demand an end to the severe under-funding for research and continuing medical care and support in Northern Ireland for the state. Families and supporters will gather at the Northern Ireland Assembly at 10.30 am. Families will meet with their MLA from noon until 2 pm, followed by a meeting in the dining room of members of 2 pm to 4 pm
The action of the Hall is organized by Action Duchenne, the only UK charity solely dedicated to raising awareness and raise funds for research into treatments and a cure and provide support to families affected by Duchenne. Duchenne muscular dystrophy affects 1 to 3 500 men births in the UK and is the most common and severe type of muscular dystrophy – Patients are usually diagnosed by the age of five and rarely live past twenty years.
Families will stop funding for medical research and a cure for the government to provide multidisciplinary centers that can provide standards of care required for patients with DMD. Recent clinical trials of treatments for the disease have shown promising results, but additional funding is needed to support more research. Access to the kind of multidisciplinary care, described in the standards of care published last year, could add as much as 10 to 15 years of life expectancy and also improve the quality of life. There are currently no Centres of Excellence for the treatment of Duchenne in Northern Ireland.
They will be further challenge the government recently announced review of mobility allowance, which will affect many young people with Duchenne. The reform proposes to abolish the transportation arrangements (from October 2012) for children with disabilities in a residential school, now claimed through the disability living allowance and providing access to a vehicle suitable for transport of children, or a weekly allowance to help with costs for accessible transportation.
The charity expects many families to support the lobbying event, despite the fact that travel with the condition can be very difficult.
Nick Catlin, CEO of Action Duchenne, and the father of Saul, 9, who has Duchenne, commented, “This government is looking for every possible way to reduce services, but to deprive the children more in need of transportation is a cut too far. Now is the time for us to take action and challenge the government on their policies to provide support where it is needed most and affects real life.
“Our campaign is urgent and we are delighted that many of our families have made a huge effort to support it. With our many supporters, including clinicians and experts, we are fortunate to assign to history Duchenne terrible waste of young lives. It is time for the government to act and provide funding to help develop treatments and to provide standards of care and support that our young people have the right. ”