We’re excited to bring the myotonic dystrophy (DM) community together for a month of activities and resource features focused on movement! Join us throughout July for live webinars, virtual classes, and opportunities to make new friends.

MDF is excited to introduce Shaun Moore as a new MDF Support Group Facilitator! MDF’s Senior Manager of Community Engagement, Lucie Shiffman, sat down with one of our new Support Group Facilitators (SGFs) for the Affected Men’s Group to learn more about his story, his experiences with myotonic dystrophy, and his inspiration to get involved with MDF.

Ms. Alexandra L. Marrero Quinones, a dual-degree student pursuing Human and Molecular Genetics & Genetic Counseling at Virginia Commonwealth University (VCU), is currently a doctoral candidate in the Myotonic Dystrophy Translational Research Program (MDTRP) where she is mentored by Dr. Nicholas Johnson. Alexandra's long-term goal is to identify genetic modifiers of disease severity in DM1.

The House Appropriations Committee released their fiscal year 2025 Department of Defense report, and did not fund any new disease specific Congressionally Directed Medical Research Program (CDMRP) initiatives. Although this is not the news we hoped for, there is still a possibility that the Senate Appropriations Committee will support our CDMRP request when they release their FY25 report in July. Thank you to all the MDF Advocates for your hard work and support of these efforts!