MDUK are hosting two free virtual information seminars in January.
Each webinar will focus on a specific topic, such as helping you understand more about your condition, sharing the latest information about treatments, or providing updates on research. As well as people living with a muscle wasting or weakening condition, they are also open to friends, family members and carers.
Today Is International Myotonic Dystrophy Awareness Day!
The colour green has been chosen to represent International Myotonic Dystrophy Awareness Day which takes place on 15 September and many buildings throughout the world will be lit up green on the day! As MDI’s News Update focused on Myotonic dystrophy last January, we are happy to provide an update on research developments since then.
Spotlight on members of our community living with neuromuscular conditions: Donal McTernan
Over the coming months we’re sharing spotlights on individual members of our community who are living with a variety of neuromuscular conditions. We began on Rare Disease Day, 29 February, to draw attention to the fact that rare disease isn’t just for one day. By sharing individual stories and information on their condition, we want to raise awareness about the many neuromuscular conditions experienced by the diverse members of our community to whom MDI offers support. Special thanks to Donal for sharing his story and raising awareness about myotonic dystrophy. The spotlights will be added to a dedicated page on our website so that you can learn about people’s experiences of living with each condition
Round Up On Research Developments By Condition
Neuromuscular conditions can be difficult to diagnose and manage, so research is vital for families and for quality of life. In this issue, we include a round-up of some research developments that have taken place in recent months