MDF Family Registry

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Join the Myotonic Dystrophy Family Registry today and help us better understand and improve the lives of the people and families living with DM.

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Join the MDFR!

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Help Find a Cure for DM

2023 Myotonic Dystrophy In Motion

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Myotonic Dystrophy News

April 30,2024

MDF Sponsors & Attends the 2024 International Myotonic Dystrophy Consortium Meeting

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

April 30,2024

Thank You Advocates, 11 U.S. Representatives Sign DM Research Letter

Over the past several weeks, MDF advocates asked their Representatives to sign the Kiggans Moskowitz Letter urging the House Appropriations Defense Subcommittee to include $10m for peer-reviewed myotonic dystrophy research funding as part of the CDMRP.

April 30,2024

Research Fellow Feature: Betty Bekele

Rotations in labs studying movement disorders and anxiety-like behavior Ms. Bekele to Dr. Gary Bassell's Lab, where she immersed herself in DM1 research. However, her vision extends beyond research, aiming to build her global network supporting professionals, caregivers, and patients affected by DM.

April 28,2024

Early Career Research Grant Feature: Dr. Tahereh Kamali

With degrees from Shiraz University a PhD from the University of Waterloo, Dr. Tahereh Kamali has a strong background in computer science and systems design engineering. Since joining Stanford's Department of Neurology, she has focused on exploring the effects of myotonic dystrophy on the central nervous system.

April 28,2024

Participants Needed for Research Study for Women with DM

Learn about a new research study at the University of Rochester called, “Sexual and menstrual function in Women with Myotonic Dystrophy and Facioscapulohumeral muscular dystrophy", conducted by Dr. Johanna Hamel and Jeanne Dekdebrun.

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.

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