Two weeks ago, the National Institutes of Health (NIH) announced a "pause" on all grant review panels, external communications, new hiring decisions, travel, and the release of new grant funding. This decision has caused confusion and concern among researchers, clinicians, and—most importantly—patients and their families.

The Myotonic Dystrophy Foundation (MDF) has been closely monitoring this situation and engaging with leaders in the patient advocacy and rare disease communities, as well as with Congress. While some restrictions appear to be lifting, uncertainty remains. That is why MDF is urging the community to contact Congress now and emphasize the urgent need to immediately lift these restrictions and fully restore NIH operations. 

Since our founding, the Myotonic Dystrophy Foundation has been committed to urgently eliminating all obstacles to DM research. Consistent with that core value, we believe these NIH restrictions are harming myotonic dystrophy research and could ultimately delay the day we see the first FDA-approved treatments and a cure for DM.

📢 Take Action Now!

Email your Senators and Representatives to urge them to fully restore NIH operations and protect life-saving myotonic dystrophy research. Ensuring continued funding and support for biomedical research is essential to advancing treatments for myotonic dystrophy and other serious diseases.

📝 Send your message today and help keep progress moving forward.

Thank you for advocating for the myotonic dystrophy community!