Clinical Care Recommendations

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MDF has published the first-ever Consensus-based Care Recommendations for DM1, CDM and DM2! Download and share them with your clinicians and help us improve care for DM families!

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Clinical Care Recommendations

MDF Family Registry

Myotonic Dystrophy News

May 22,2025

Over 700 People Attend the 2025 MDF Conference

The 2025 MDF Conference was our largest and most international gathering to date. With more than 700 attendees from 34 US States and 10 countries, we were thrilled to welcome such a vibrant and engaged global community.

May 22,2025

High-Priority Grant Recipient Feature: Samuel Carrell, MD, PhD

Dr. Samuel Carrell's scientific and clinical focus has been directed toward myotonic dystrophy since his PhD at the University of Rochester, where he studied DMPK reduction in mouse models. His work contributed to understanding the cardiac risks of DMPK reduction, supporting the therapeutic potential of antisense oligonucleotide therapies. Dr. Carrell also developed methods for measuring toxic CUG repeat RNA and investigating allele-selective targeting.

May 8,2025

High-Priority Grant Recipient Feature: Katarzyna Taylor, PhD

With over a decade of experience in DM1 research, Dr. Katrarzyna Taylor has advanced therapeutic strategies using antisense oligonucleotides, small compounds, and drug repositioning. She has developed expertise in molecular techniques, bioinformatics, and therapeutic screening.

April 11,2025

Celebrate Myotonic Dystrophy In Motion Awareness Month 2025 – Movement Matters this July

This July, MDF is thrilled to host the 2025 Myotonic Dystrophy In Motion Awareness Month—a month-long celebration centered around the theme: Movement Matters.

April 11,2025

Research Fellowship Feature: Cécilia Légaré, PhD

Dr. Légaré started her DM1 research in 2013 during an undergraduate internship and continued through her master’s. She published two first-author papers (Epigenomics, 2020; Neurology Genetics, 2019) and one second-author paper (Human Molecular Genetics, 2019). She now applies this expertise to DM1 research and is currently working on the project “Identification of a transcriptomic signature in myotonic dystrophy type 1”.

Questions?

Request Warmline Support! MDF offers a professionally staffed Warmline for people living with myotonic dystrophy, their caregivers, medical professionals and others to ask questions, find support and guidance and, when appropriate, be connected to additional resources and services. Click here to request Warmline Support.

Additional questions? Contact MDF by email at info@myotonic.org or give us a call at 415-800-7777.

Clinical Care Recommendations