Myotonic Dystrophy Research Professionals Gather In Nijmegen

MDF is proud to report on its sponsorship and participation in the prestigious 14th International Myotonic Dystrophy Consortium Meeting (IDMC-14) held in Nijmegen!

Drs. Skinner, Rohrwasser, and Stevenson represented the Myotonic Dystrophy Foundation (MDF) at the IDMC-14 meeting April 9-13th in the oldest city in the Netherlands: Nijmegen. The international conference attracts the entire international professional myotonic dystrophy community and combines basic research, clinical research, pharmaceutical development as well as patient and medical care focus.

With over 400 predominantly professional attendees, IDMC presentations were broadly structured into historic overviews and perspectives, pathogenic mechanisms, patient engagement, biomarkers and outcome measures, clinical manifestations and quality of life, cell and animal models, clinical trials and clinical trial designs, therapeutic strategies and drug development, children with DM, and clinical management and rehabilitation. Early career scientists and clinicians presented along with respective opinion and thought leader regarding research progress and study outcomes. Multiple poster sessions complemented the program.

While the program and the presentations were carefully selected, organized, and truly outstanding, for MDF, it was particularly exciting that almost all of our Research Fellows and Early Career Grantees were able to attend and present their important work. MDF grantee highlights included:

• Melissa Hale shared updates from her latest projects and enthusiastically offered invaluable career insights to aspiring investigators.
• Cameron Niazi sparked an exciting debate with David Brook on mechanisms of RNA foci formation.
• Preeti Kumari, Lily Cisco, Benjamin Gallais, Jiss Louis, Johanna Hamel, Emma Shea, and Matteo Garibaldi shared important insights on their groundbreaking research.
• MDF's Fellows and Early Career Scholars also showcased their research through the poster sessions, including Jesus Frias with a dynamic Flash Poster talk.
• Sakura Hamazaki, earned the prestigious "Best Poster in Basic Science" award for her outstanding presentation.

During a pre-meeting organized and hosted by the European Myotonic Dystrophy Association (Euro-DyMA), pharmaceutical programs presented updates of their drug development programs and progress towards clinical trials. The recorded presentations are thereafter shared with the patient community in Europe. This is similar to MDF’s "Industry Updates" held at MDF conferences so Euro-DyMA and MDF will collaborate to host these sessions together at the 2025 MDF Annual Conference May 2-3rd.

The conference concluded with a family day for local (Dutch) families after an award ceremony for best research posters and best presentations for young professionals, as well as the presentation of the Steinert Awards for lifetime achievements and contributions to DM clinical and professional advancements. Dr. Andy Rohrwasser, MDF's Chief Science Officer, had the honor of presenting the esteemed Steinert Clinical Sciences Awards to two distinguished members of MDF's Scientific Advisory Committee (SAC): Dr. Cynthia Gagnon and Dr. Darren Monckton! This recognition underscores their exceptional contributions and dedication to advancing myotonic dystrophy (DM) research.

Thank you to the IDMC-14 Dutch Coordinating Committee and all of our global partners for curating an incredible event! We look forward to seeing everyone in at IDMC-15 in Canada in 2026!

See below a full list of speakers and their collaborations with MDF.

About the International Myotonic Dystrophy Consortium (IDMC)

IDMC, serves as a biennial gathering of leading experts, researchers, clinicians, patients, and industry professionals in the myotonic dystrophy field. It provides an opportunity to connect peers and experts from around the world, encourages the exchange of knowledge and ideas that help expand our understanding of DM.

Click here to learn more about IDMC-14.

MDF Accelerates Myotonic Dystrophy Research

MDF's Scientific Advisory Committee (SAC)

The SAC is a group of leading myotonic dystrophy specialists and researchers from around the globe, who collectively have devoted more than 125 years to studying muscle diseases, specifically myotonic dystrophy. Our advisors provide guidance, grant peer reviews, and speak at our conferences. Click here to learn more about MDF's Scientific Advisory Committee.

Myotonic Dystrophy Research Fellows

Since 2009, MDF has provided two-year pre- and postdoctoral research fellowships to support new and innovative studies relevant to the pathogenesis of DM, disease progression, best practices in clinical management of the disorder, and therapeutic and diagnostic development for myotonic dystrophy. Learn more about MDF's Research Fellowships by clicking here.

Research Grants & Funding Resources

MDF supports scientific investigations to enhance the quality of life of people living with myotonic dystrophy and advance research focused on finding treatments and a cure for this disease. As a part of this effort, the MDF offers a number of funding opportunities for DM researchers and supports research efforts. Click to read more about MDF's Grant Program.