Where your money goes

Research

We fund world-class pioneering research into potential treatments and cures. With an international reputation for excellence, our medical research programme laid the foundations for the promising technology of ‘exon skipping’, currently being tested in clinical trials for boys with Duchenne muscular dystrophy, and funded work that has led to a scientific breakthrough in finding a treatment for *mitochondrial myopathy, now close to clinical trial.

*Mitochondrial myopathies are genetic disorders of muscle, which affect the mitochondria – the ‘energy factories’ of cells. Without a sufficient supply of energy, the cells fail to function properly, causing disease.

Care, support, advocacy

Through our information service, care, advocacy and peer-to-peer support networks, we support more than 5,000 families each year. Our information service has been accredited with the Information Standard award, meaning that the Department of Health has endorsed its accuracy and currency. Our advocacy service helps individuals and families across the UK to access the services to which they are entitled, and fights on their behalf to get the care and support they require.

Policy and campaigning

The Muscular Dystrophy Campaign helped to launch and develop the cross party groups on muscular dystrophy in each of the four parliaments of the UK, ensuring that ministers, civil servants and elected parliamentarians take urgent action to fill the gaps in specialist care. Our campaigning and awareness-raising activities have seen a number of successes, for example an improvement in specialist care and local access, which saw the number of NHS-funded neuromuscular care advisors more than doubling – from 13 to 30 – between 2009 and 2011.

Equipment grants

Through the Joseph Patrick Trust, the welfare fund of the charity, we award grants to individuals towards the cost of specialist mobility equipment not available on the NHS. In the 25 years since it was established, the Trust has awarded more than £6m in specialist equipment grants.