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News and Stories


July 1, 2019

A new clinical trial is underway to study the safety, tolerability and pharmacokinetics of ERX-963, a potential therapy for symptoms of excessive daytime sleepiness that may include impaired attention or concentration. The first site for that study, Stanford University, is now recruiting, under the direction of Principal Investigator Jacinda Sampson, MD, PhD.

June 17, 2019

Dyne Therapeutics has announced a significant investment in the Myotonic Dystrophy Clinical Research Network (DMCRN), which MDF helped launch and expand over the past 5 years, to include new sites across the UK and Europe.

June 6, 2019

When Luke Bolt was 13, he noticed his hand would lock up when he wrote with a pencil. It was annoying, but it would be several months before he mentioned the problem to his father Steve one night at dinner. When his mother Jodie heard about the problem, myotonic dystrophy was on the top of her list of possibilities.

June 6, 2019

Did you know that MDF has 22 in-person support groups throughout the country, and 5 virtual support groups? MDF recently launched two new monthly virtual support groups:

May 9, 2019

By the time Tim Haylon launched a Facebook fundraising campaign for his birthday in 2018, there was already a long-established Haylon family tradition of financially supporting myotonic dystrophy research.

May 9, 2019

Northern California MDF Support Group Facilitator Leslie Krongold organized a MDF Family Day at Great America in the San Francisco Bay Area on April 7th. She was joined by 25 community members across 6 families.

May 8, 2019

MDF has had a busy few months of activity in Washington, DC, continuing our efforts to secure research funds, engage lawmakers and make our presence known on Capitol Hill in 2019.

May 2, 2019

SAN FRANCISCO, CA (May 2, 2019): The Myotonic Dystrophy Foundation (MDF) is pleased to announce the publication of the first-ever Consensus-based Care Recommendations for Congenital and Childhood-onset Myotonic Dystrophy Type 1 and Myotonic Dystrophy Type 2.


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