Action Duchenne

Paul Bown
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About Duchenne Muscular Dystrophy

 

Duchenne muscular dystrophy (DMD) is the most common fatal genetic disorder diagnosed in childhood. It affects around 1 in every 3,500 live male births and there are approximately 2500 people with DMD in the UK.

 

DMD is caused by mutations to the Dystrophin gene. The Dystrophin gene is found on the X-chromosome, and as such it primarily affects boys with less than 1% of those with Duchenne being female. However, it occurs across all races and cultures.

 

Duchenne is a congenital condition resulting in progressive loss of muscle function. In the absence of fully functioning Dystrophin, muscle cells are easily damaged. The first muscles to be affected are the proximal muscles, affecting the ability to walk. Eventually the condition affects the intercostal muscles, causing serious medical issues relating to the heart and lungs.

 

As well as the obvious physical symptoms, those with DMD are more likely to have a range of learning and behavioural conditions such as autism, ADHD and dyslexia.

 

Life expectancy for those with DMD is improving as standards of care and knowledge about Duchenne increases. Young men with Duchenne typically live into their late twenties , and some men now live into their 30's and 40's

 

Duchenne is an extremely complicated condition and patients require frequent access to expert, specialised, multidisciplinary care. Current medical practice is to manage the symptoms of DMD with steroids and other medications. At this time there is no cure for Duchenne.




Action Duchenne

 

Action Duchenne is the first UK charity dedicated to finding a cure or viable treatments for Duchenne Muscular Dystrophy. Founded by parents of a child with Duchenne in 2001 we are now a UK wide charity with 10 staff. Our strategy focuses on 6 main areas:

 

  • Funding cutting edge research to find a cure or viable treatments for DMD.  We have funded over £4 million of research since 2003, and were a key part of the foundation of the MDEX consortium which funded initial research into Exon Skipping, a highly innovative genetic therapy. Action Duchenne is currently funding multiple projects at Oxford, Newcastle and Royal Holloway University, the SKIP-NMD project and a Tripartite agreement with the Chief Scientific Officer and another charity (The MDC) to fund a clinical research fellowship for Duchenne in Scotland.

 

  • Running education and transition projects for our community. These include the Decipha literacy intervention and the Takin’ Charge’ transition programme which helps prepare 14-19 year olds with Duchenne, for adult life.

 

  • Information - providing information to families on a variety of important issues including ‘Talking to your Child about Duchenne’, ‘Bone Density and Steroid Use’ a Learning and Behaviour Toolkit, an Accident & Emergency pack which is vital for healthcare professionals who are unfamiliar with the condition and the ‘Family Guide to Standards of Care in Duchenne’.

 

  • Campaigning - holding annual lobby events to demonstrate the importance of expert, specialised, multidisciplinary care for people with Duchenne. Working with other organisations and individuals  on issues such as access to medicines, housing adaptations and respite care.

 

  • Conference - Action Duchenne organise the largest International Duchenne Conference in Europe. This is a unique forum bringing together, people with DMD and their families, researchers, clinicians, health Care and transition/education professionals in Duchenne together to tackle Duchenne


 

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