MDF advocates met with Members of Congress to advance federal myotonic dystrophy research funding and honor Senator Chris Van Hollen.

Last month the MDF, a proud member of the National Center for Advancing Translational Sciences (NCATS) Alliance - a coalition of organizations, researchers, and industry partners working to expand federal support for translational science and rare disease research - co-hosted a bipartisan congressional staff tour of the National Institutes of Health (NIH) NCATS laboratories in Bethesda, Maryland.

On September 2, 2025, Patrick “Pat” Cornell—known to many as Vroom Old Man—rolled into Indian Motorcycle of Southeastern Virginia in Newport News, VA. There, he officially crossed the finish line of his original goal: 125,000 miles in 125 days, a record-breaking motorcycle ride that united riders, rare disease advocates, and families affected by myotonic dystrophy (DM).

Thank You for Helping Us Reach New Heights at the 2025 MDF Gala! MDF is thrilled to announce that our 2025 Gala raised a record-setting $2 million to accelerate research, expand care, and strengthen support for families living with myotonic dystrophy (DM) around the world!