What we do
The Muscular Dystrophy Campaign is the leading UK charity fighting muscle-wasting conditions. We are dedicated to beating muscular dystrophy and related neuromuscular conditions by finding treatments and cures and to improving the lives of everyone affected by them.
We fund research into treatments and cures
We fund world-class pioneering research - from basic science and translational research to clinical pilot studies - with around 20 projects live at any one time. In addition, there are currently several general research projects on topics such as stem cells and quality of life that could also benefit people with these conditions.
The Muscular Dystrophy Campaign works relentlessly to identify and invest in the most promising research, with a focus on basic science, the development of therapeutic approaches and clinical trials in the field of muscular dystrophy and related neuromuscular conditions.
"Without the support of the Muscular Dystrophy Campaign in the battle to treat muscular dystrophy, I dread to think where we would be. There have been tremendous advances in both medical care and translational research in recent years which have transformed natural history of Duchenne muscular dystrophy."
Ros Quinlivan, Consultant Paediatrician, Birmingham Children's Hospital
"It is an interesting question - where would we be without the Muscular Dystrophy Campaign funding? The basic answer is we wouldn't be anywhere as they are the funders that have really got this research off the ground. "
Professor Doug Turnbull, Professor of Neurology at the University of Newcastle
We provide care and support
The Muscular Dystrophy Campaign provides practical information, advice and emotional support for individuals with muscle-wasting conditions, their carers and families. Through our care and support services, peer-to-peer support networks and our advocacy service, which helps people to access the services and equipment they are entitled to, we support more than 5,000 families every year.
Through our advocacy service, which is dedicated to helping anyone affected by muscular dystrophy and related neuromuscular conditions who is experiencing difficulties getting the services or equipment they are entitled to. In 2011, we secured approximately £300,000 worth of support that had previously been denied.
We are willing to look at any case put in front of us, for example, getting an appropriate care package, applying for housing adaptations or access to specialist health care services or equipment. The advocacy team also offers free advocacy, support and advice to anyone who is experiencing difficulties with their local services.
We award grants towards the cost of specialist equipment
Through our welfare arm, the Joseph Patrick Trust, the charity awards grants for specialist mobility equipment to promote independence and enhance quality of life. The equipment is usually not available through the NHS, and is often prohibitively expensive and unaffordable. Since 2006, we have provided £4.2 million worth of grants towards specialist equipment to 1,400 families across the UK.
We provide specialist education and development for health professionals
Individuals living with one of the more than 60 types of muscular dystrophy and related neuromuscular conditions supported by the Muscular Dystrophy Campaign, require specialist care and treatment. Funded by the Muscular Dystrophy Campaign since 1980, regional care advisors are specialists who provide vital support, advice and information, support physical and emotional wellbeing through regular clinics, and educate other health professionals.
Their training backgrounds include nursing, social care, physiotherapy and occupational therapy. They work with statutory service providers, education authorities and other professionals to advise, support and best meet the needs of people with muscular dystrophy and related neuromuscular conditions.
Towards the end of 2011, the charity successfully campaigned to secure full NHS funding for neuromuscular care and there are now 31 fully-funded posts. While we work very closely with care advisors (including one care advisor who is based in-house and jointly managed by us and the NHS), the service is now funded by and embedded within the NHS at neuromuscular clinics in various regions throughout the UK.
We campaign for improved health services
We actively campaign for improvements to the support provided to everyone with muscular dystrophy and related neuromuscular conditions in the UK. In 2008/9, the Muscular Dystrophy Campaign set up patient-led Muscle Groups, providing a way for people with muscle-wasting conditions to influence change in response to evidence of serious inadequacies and inconsistencies in care across the UK. They now operate UK-wide as regional campaigning groups - for the first time giving a voice to people affected by muscular dystrophy and related neuromuscular conditions to speak out for improved health and social care.
Among the groups' campaigning successes are: NHS funding for 31 neuromuscular care advisor posts across the UK; a £1million investment in the South West in new care advisor posts and co-ordinated care through a Neuromuscular Network.
