17th June 2008
Action Duchenne lobbies for Government support to help find a cure for Duchenne Muscular Dystrophy
Parents and boys living with DMD march on Downing Street to raise awareness of heartbreaking disease
On 18 June, boys living with Duchenne Muscular Dystrophy, their parents and supporters will be lobbying MPs and marching to No. 10 Downing Street to bring an end to serious under-funding for research into the condition. The action is being organised by Action Duchenne, a registered charity dedicated 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 has no cure. It is a severe muscle wasting disease that affects boys and young men, resulting in boys being in a wheelchair by aged 10 and without treatment, dying in their late teens or early twenties. Duchenne affects 2,500 people in the UK and about 40,000 people worldwide. The gene that causes Duchenne was discovered in 1986, and yet since then the Government has provided only £2.2m of funding for research and clinical trials for treatments and a cure.
Prime Minister Gordon Brown stated on 31 October 2007, “The Government fully accepts that everything possible needs to be done to bring an end to the tragic impact Duchenne Muscular Dystropy has on individuals and their families.”
With this in mind, Action Duchenne will be calling on the Government to:
• Redress the historically poor levels of research funding over the last 10 years by allocating £30m of funding for new Duchenne research and clinical trials
• Increase the number of Centres of Excellence for Translational Research into this condition to cover the whole of the UK (like the centre recently opened at Great Ormond Street Hospital)
• Ensure that all people living with Duchenne are given immediate access to new drugs and treatments
• Ensure that all people living with Duchenne receive appropriate support within 50 miles of their home
People living with Duchenne will be travelling to London to take part in the lobby from all around the country. For many this will be a difficult journey due to the severe nature of the condition.
Carl Tilson who is living with Duchenne and is an active campaigner for Action Duchenne said, “I will be attending the Lobby of parliament on 18th June in London. I have been living with Duchenne for 20 years and now it has got to the stage where I am paralysed and can’t walk or even feed myself. Everything has to be done for me. Many of my Duchenne friends have died. The worst thing is living with this death sentence on my head. They have made great strides in medical research but lack of government funding for clinical trials is holding back a cure or treatment.”
Carl continued, “I want to say to Gordon Brown that I was pleased to hear you say you would do everything to help us. But Gordon, is £30m too much to ask? Is there anything more important to your government than saving young people’s lives? We don’t want to be a burden on our parents and we don’t want handouts. We want to go to college, we want to work and we want contribute to society. Most of all we want our bodies to function to enjoy simple things like eating real food that has not been liquidised. We want to live without the fear of a bad cold turning to pneumonia and then to respiratory or heart failure. Give the research teams and clinicians the money to get on with the job of finding a cure.”
Nick Catlin, CEO of Action Duchenne said, “Through our work with the Race Against Time Campaign where Action Duchenne was instrumental in bringing together scientists and researchers and two other charities, 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. 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.”
In addition to the lobby there will be a celebrity football match between the Arsenal ex-professional / celebrity team and an Action Duchenne team on Sunday 15 June. The match, which will help to raise awareness of Duchenne Muscular Dystrophy will take place at Edgware Town Football Club. Gates open at 2pm and kick off is at 3pm.
Notes to Editors:
About Action Duchenne
Action Duchenne (formally Parent Project UK) was set up by Duchenne families in 2001 to promote new research for a cure for Duchenne. The charity has a strong record in funding research and has to date funded 8 major projects costing £800,000 and has lead the £1.6m DoH funding of the MDEX project. These projects have enabled much needed early work to be completed on exon skipping and other therapeutic approaches.
Action Duchenne holds an international conference every year to bring together researchers and families to exchange new research developments and provide a vital meeting venue for scientists.
In 2005 Action Duchenne launched the Duchenne Registry, the first National Duchenne database that holds gene information of people living with Duchenne and can be used to speed up the recruitment of patients for clinical trials.
In 2006 Action Duchenne launched a comprehensive learning and behaviour toolkit for use by parents and education professionals.
For more information please visit: www.actionduchenne.org
Nick Catlin CEO,
Tel: 0208 556 9955
PR Artistry Limited
Tel: 01491 639500
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