Skip to main content

Myotonic Dystrophy Support Group

Myotonic Dystrophy Support Group is the first Support group in the world to support just families with the genetic neuromuscular condition Myotonic Dystrophy. 

The origins and growth of Myotonic Dystrophy

I didn’t start out to form a support group, I just wanted to contact another family with the condition. My son, Peter’s diagnosis lead to the forming of the national charity, Myotonic Dystrophy Support Group in 1989. Over many years we built up 2,000 families on our database. I was recognised for the work I had done by being made a torch bearer in the 2012 London Olympics! Peter died aged 43 and my husband died aged 62 with the same condition.

The support Group has been helping people for 32 years!

International Myotonic Dystrophy Awareness Day

Myotonic Dystrophy Support Group celebrates the international awareness day on 15 September 2021.

To find out more about Myotonic Dystrophy and the support that Myotonic Dystrophy Support Group provides, visit their website.

Join our alliance of 200+ SUPPORT ORGANISATIONS AND charities