Michelle and Michael Young gave a brilliant live interview on Sky News last night about the importance of Scottish boys receiving Translarna. Michael, who has Duchenne muscular dystrophy, launched a petition last month calling for help from First Minister, Nicola Sturgeon to reverse the decision.
We are delighted that Professor Darren Monckton will be presenting updates on his research at the Scottish research conference on Saturday 18 June. Professor Monckton and his team at the University of Glasgow are interested in genetic variations causing genetic conditions such as myotonic dystrophy.
Hi, my husband has Facioscapulohumeral muscular dystrophy, he has suffered with it his whole life and really struggles to lift things, has pains in his shoulders and is really self concious. I was wondering if anyone knew of anything he could try or if there was any research going into a cure. Thanks. ... See MoreSee Less
Working with local neuromuscular teams to improve local services is one of our top priorities.
Claire Bosanquet from Keyworth and her two sons Tom and Jack, both with Duchenne, helped us to secure additional care advisor support in the East Midlands. She said: “A care advisor is an expert advocate, someone in your corner through all of this, and one of the few people who understands the pressure we are under as a family.”