Myotonic dystrophy affects more than 9,000 people in the UK. We offer you support through our advocacy and support services. We're here for you.

Myotonic dystrophy

Individuals with myotonic dystrophy experience progress muscle weakness and wastage. The type of condition differs greatly. The rate of deterioration is commonly slow, with little change over a long period; some people never have significant muscle disability. Age at onset is very variable. Symptoms may appear at any time from birth to old age.

The Muscular Dystrophy Campaign provides advice and support for individuals living with myotonic dystrophy and their families, and for health professionals.  We lead the search for treatments and cures for muscle-wasting conditions.

In this section you'll find the latest information about myotonic dystrophy and helpful resources.

The Muscular Dystrophy Campaign supports individuals and families by:

  • funding myotonic dystrophy research projects and providing information on research progress
  • supporting the training and development of the next generation of scientists and funding clinical trials co-ordinators in the drive towards potential treatments for muscle-wasting conditions
  • developing a national registry for myotonic dystrophy in partnership with the Myotonic Dystrophy Support Group including funding the registry curator post based in Newcastle
  • working with, and providing training and education for, NHS-funded care advisors
  • taking a leading role in driving NHS support for neuromuscular networks and spearheading campaigns to improve access and quality of specialist care
  • offering advice and information and enabling people to overcome difficulties through our advocacy service
  • providing grants towards specialist equipment to help people to live as independently as possible
  • helping people to connect with each other through our local Muscle Groups, online via TalkMD, at conferences and events; and through Trailblazers, our national network of young disabled people.

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There is a role for everyone in the fight against muscle-wasting conditions.  We are a small but strong community of people in the UK and we are determined to win this fight, together.

Myotonic dystrophy Appeal

We are currently seeking to raise £104,594 to fund a three-year project which could bring us closer to a clinical trial for myotonic dystrophy. Read more about our Myotonic dystrophy Appeal.

Support and Information

Always remember, the charity is here for you and your family.  For more information about myotonic dystrophy or for support, contact our freephone support line or send us an email (Monday to Friday 8.30am - 6pm): 0800 652 6352 (freephone)

Beating muscle-wasting conditions such as myotonic dystrophy is a massive challenge requiring a collective effort, but with advances made in research over the last 20 years there has never been a better time to join us. Together, we can win the fight.

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