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A global alliance of over 50 myotonic dystrophy-focused organizations have, once again, united to celebrate Myotonic Dystrophy Families Day on July 23rd, and International Myotonic Dystrophy Awareness Day on September 15th. In addition to its core mission of raising DM awareness among the general population, many members are also leading efforts in two specific areas of focus to maximize impact in 2022.

MDF is happy to welcome four new interns, across several departments, to the team this Summer! We are delighted that Annalise, Emily, Niv and Pari will be contributing to the MDF mission of Community, Care, and a Cure and helping to advance our work through projects tailored to each of their skill sets. We appreciate all of their enthusiasm to improve our support of the DM community! 

When the COVID pandemic hit two years ago, I thought it might be worthwhile to have a special virtual support group for older adults with DM1. Many in-person and online support groups are open to adults with DM as well as their family members. I wanted to limit the membership to only those with the condition. In December of 2021, the monthly DM1 Over 50 Zoom group launched.

U.S. House Appropriations Committee included a MDF led provision in the fiscal year 2023 Labor, Health and Human Services funding legislation that will help establish a new Repeat Expansion Disease Initiative (REDI) at the National Institutes of Health (NIH) to increase federal funding for research on repeat expansions like myotonic dystrophy.

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