The Myotonic Dystrophy Foundation (MDF) is asking advocates across the United States to contact their U.S. Senators and urge them to support $10 million in dedicated myotonic dystrophy research funding. MDF is also asking Congress to increase federal funding for the National Institutes of Health (NIH) and DM research as part of the Fiscal Year 2027 budget.
As of August 2026, the Senate’s funding bills remain unfinished, giving the DM community an important opportunity to speak up.
A sample email is ready in the MDF Advocacy Center. Please add one or two sentences about your connection to DM and what research progress would mean to you or your family. A personal message can help your Senators understand why this funding matters.
Why Myotonic Dystrophy Research Funding Matters
For nine consecutive years, MDF volunteers have successfully advocated to keep myotonic dystrophy eligible for funding through the Department of Defense Peer Reviewed Medical Research Program (PRMRP). PRMRP is one of the research programs managed within the broader Congressionally Directed Medical Research Programs (CDMRP).
Since DM became eligible for PRMRP funding, myotonic dystrophy researchers have been awarded $26.5 million in federal research grants. These grants are expanding scientific knowledge and accelerating research toward meaningful treatments and a cure.
Building on this progress, MDF launched a campaign several years ago to secure an additional $10 million in new, dedicated myotonic dystrophy research funding through CDMRP. Although the request has not yet been included in the federal budget, MDF remains persistent in advocating for a fair share of federal research funding for the DM community.
MDF Advocates Are Building Support in Congress
Earlier this year, MDF advocates from all 50 U.S. states sent 2,010 messages to Congress in support of the campaign. These emails, calls, and meetings with congressional offices have increased awareness of DM and strengthened support for greater research funding.
This year:
- Twelve U.S. Senators signed Senator Amy Klobuchar’s letter to the Senate Appropriations Committee.
- Seventeen U.S. Representatives signed Congressman Jared Moskowitz’s letter to the House Appropriations Committee.
- A total of 29 members of Congress supported the $10 million request, more than twice the support secured in 2025.
See the full list of congressional supporters and learn more about this progress.
The House Appropriations Committee has completed work on its versions of the Fiscal Year 2027 Defense and NIH funding bills. The $10 million request was not included in the House Defense bill. However, the Senate’s work remains unfinished, and there is still an opportunity to influence the outcome.
Contacting your Senators today could make a meaningful difference.
“Families affected by myotonic dystrophy cannot afford to wait. A dedicated $10 million federal investment would accelerate research and give our community real hope for meaningful treatments and a cure. Every message builds the momentum we need. Please contact your Senators today.”
Contact Your U.S. Senators Today
Visit the MDF Advocacy Center to email your Senators and ask them to support:
- $10 million in dedicated myotonic dystrophy research funding through CDMRP.
- Increased federal funding for NIH and myotonic dystrophy research.
A sample message is provided, but your personal experience can make it more powerful! After sending your email, consider calling your Senators and sharing the action alert with family and friends.
Strong relationships with Congress will also be important as potential treatments move through the myotonic dystrophy drug development pipeline. Continued advocacy can help increase research funding now and support access to future FDA-approved treatments.
Join the September 15 Advocacy Program
Community advocates are also raising DM awareness by asking local, state, and provincial governments to issue proclamations recognizing International Myotonic Dystrophy Awareness Day on September 15.
Join MDF on September 15 for a special advocacy program about leading a successful proclamation campaign. Volunteer advocates will share how they approached elected officials, the steps they followed, and what they learned along the way.
The presentation will help you understand how to:
- Find and contact the appropriate government office.
- Make a clear and effective proclamation request.
- Share your personal connection to DM.
- Build local awareness after a proclamation is issued.
You can also explore MDF’s updated Proclamation Toolkit for customizable language, outreach tips, and step-by-step guidance.
Subscribe to the MDF YouTube Channel to watch on September 15!
Whether you contact your Senators, request a local proclamation, or take both actions, your voice can help increase awareness, advance research, and build a better future for everyone living with myotonic dystrophy!
