Myotonic Dystrophy Support Group known as MDSG was the first support group founded to give support to only families with DM. that was 34 years ago. Amazing how the awareness of the condition has spread around the world, BUT not far enough. One of the aims of the UK MDSG is to spread awareness not just to families but to medical professionals.
Research is so important, and many of our legacies we receive are earmarked for research. The 3 research teams in the UK give encouragement to our members and they attend our Annual Conferences and talk to the members in words that we understand! We are looking forward to a face to face meeting for conference next year.
Area meetings have restarted and the small meetings have been very beneficial. We have 17 contact families (Contact families are people who will be in Contact with families who live in their area.) around the UK and have had over 2,000 families that we have had the pleasure to contact either by literature or by the telephone helpline. Rare Diseases Day was our first face to face get to gather and the Researchers from Nottingham Medical school joined us and told us of their research in Myotonic Dystrophy Awareness Day was highlighted, in north of UK green lights where in buildings. In the South of UK a Contact person was interviewed on the radio. Prof. David Brook and myself were given a short interview on Nottingham TV.
Email: contact@mdsguk.org
URL: https://www.myotonicdystrophysupportgroup.org/
