MDF's Chief Scientific Officer, Dr. Andy Rohrwasser, summarizes a study “Increased frequency of repeat expansion mutations across different populations” published in Nature Medicine in October 2024, an important genetic study examining the presence of repeat expansions including myotonic dystrophy (DM) in over 82,000 individuals. For our myotonic dystrophy community, the study confirms the high prevalence of DM1. The study also highlights the importance of vigilance for healthcare providers suspecting the disease as the repeat expansion might be present with low repeat numbers without any (yet) apparent symptoms.

In celebration of the 4th Annual International Myotonic Dystrophy Awareness Day, our incredible community members and partners from all around the world dressed for the occasion and lit their local and national monuments in green.

After rigorous review, we are excited to share that in September, the MDF Board approved four outstanding projects to receive the MDF Pilot Grants. These research efforts will focus on critical areas for DM, including sleep, dyslipidemia, exercise, and therapeutic delivery. We are also excited to announce the launch of a new round of our Pilot Grants Program this November! This program offers $50,000 in one-year support for researchers focused on myotonic dystrophy (DM).

On the 15th of September 2024, the Global Alliance for Myotonic Dystrophy Awareness unites over 60+ organisations from around the globe to mark the fourth annual International Myotonic Dystrophy Awareness Day. This day is dedicated to raising awareness about myotonic dystrophy (DM), a complex and often misunderstood genetic disease that affects thousands of individuals and families worldwide.