No. 10 Downing Street and the Department of Health will be the destination
on Wednesday 15th June 2011 for hundreds of boys living with Duchenne
Muscular Dystrophy, their families and supporters. They will be lobbying MPs
to demand an end to the continued serious under-funding for medical care,
support and research into the condition. The lobby action is being
organised by Action Duchenne, the only UK charity dedicated solely to
raising awareness and raising funds for research into treatments and finding
a cure, and providing support for families living with Duchenne.
Duchenne Muscular Dystrophy affects 1 in 3,500 male births in the UK, and is
the most common and severe type of muscular dystrophy – sufferers are
diagnosed usually by the age of five and rarely live past their twenties.
The families will be calling for funding for medical research to find a cure
and for the government to provide the multidisciplinary centres that can
provide the standards of care required for patients with DMD. Recent
clinical trials into treatments for the disease have shown promising
results, but further funding is required to support more research. Access to
the type of multidisciplinary care, described in the Standards of Care
document published last year, could add as much as 10 to 15 years to life
expectancy and also improve quality of life.
In addition they will be challenging the government’s recently announced
decision to review the mobility allowance, which will affect many young
people with Duchenne. The reform proposes removing the transport
arrangements (from Oct 2012) for disabled children at a residential school,
currently claimed through the Disability Living Allowance and providing
either access to an adapted vehicle to transport children or a weekly
allowance to assist with costs for accessible transport.
The charity expects many families to support the lobbying event, despite the
fact that travelling with the condition can be very challenging.
Nick Catlin, CEO of Action Duchenne and father to Saul, age 9 who has
Duchenne, commented, “This Government is looking for every possible way to
cut services, but to deprive the most needy children of transport 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 people’s lives.
“Our campaign is urgent and we are delighted that so many of our families
have made such a tremendous effort to support it. With our many supporters,
including clinicians and experts, we have the chance to consign to history
Duchenne’s terrible wasting of young lives. It is time for the government to
act and provide the funding to help develop treatments and provide the
standards of care and support to which our young people have a right.”