In honor of Rare Disease Day, the Myotonic Dystrophy Foundation (MDF) is calling on you to take action! Federal decisions are threatening the future of myotonic dystrophy (DM)* research, drug approvals, and healthcare access. MDF’s CEO, Dr. Tanya Stevenson, has sent an urgent letter to Congress expressing our deep concerns about cuts to biomedical research funding, a reduction in FDA staff, and threats to Medicare, Medicaid, and other essential health programs that support the DM community.

We need YOUR voice to ensure these vital programs are protected and fully funded.

📢 Urge your representatives to protect myotonic dystrophy research! Contact Your Representatives Today!

🚨 Why This Matters for the Myotonic Dystrophy Community

The Federal Government is making decisions right now that could devastate myotonic dystrophy research and care. If we don’t act, we could face:

❌ Slashed biomedical research funding, delaying treatments for myotonic dystrophy.
❌ Reduced FDA staffing, slowing drug approvals for rare disease therapies.
❌ Weakened federally supported health coverage, making it harder for people with myotonic dystrophy to access care.

Without action, these cuts could halt scientific progress, delay life-changing treatments, and threaten essential healthcare access for the myotonic dystrophy community.

📢 Tell Congress to Support Myotonic Dystrophy Research & Care

We can change this. Your voice can help protect the future of myotonic dystrophy research, treatment development, and healthcare access. In just 60 seconds, you can send a message directly to Congress urging them to:

✔️ Fully fund biomedical research for myotonic dystrophy
✔️ Ensure FDA resources support timely drug reviews and approvals
✔️ Protect Medicare, Medicaid, and disability coverage for those living with myotonic dystrophy

Send Your Message to Congress Now – Every Email Makes a Difference!

Every email sent to Congress increases awareness of myotonic dystrophy and pushes for real policy change. Policymakers act when they hear from their constituents—and that means YOU!

Together, we can advocate for continued funding for research, faster drug approvals, and healthcare protections for the myotonic dystrophy community. 

Send your message now!

Thank you for advocating for the myotonic dystrophy community!

*Myotonic dystrophy (DM) is a progressive, multi-systemic genetic disorder affecting over 150,000 Americans. There is no cure and no FDA-approved treatments, but ongoing research and clinical trials offer hope—if they continue to be funded.

A DM Advocate’s Voice: Lisa’s Fight for the DM Community

I’m Lisa Harvey-Duren, one of 150,000 Americans living with myotonic dystrophy. During Rare Disease Week, I stood with nearly 1,000 rare disease advocates in Washington, D.C. to demand that Congress protect biomedical research, drug approvals, and healthcare access for the myotonic dystrophy community.

Right now, Congress is making decisions that could gut funding for vital research, lay off federal scientists, and delay life-saving treatments for the myotonic dystrophy community. We cannot afford these setbacks.

Please join me in urging Congress to protect biomedical research, support drug approvals, and maintain critically needed health coverage for those living with rare diseases like myotonic dystrophy.

— Lisa Harvey-Duren, MDF Advocate