Contact Congress

Contact Your Federal And State Legislators

MSUD community members are encouraged to contact members of Congress and your state legislature members to personally advocate for MSUD favorable legislation to close the gaps in access to medically necessary treatment.

Attached is a “MSUD Fact Sheet” to assist you in preparing letters for your legislator. To further assist, you can find contact information about your congressional representative and senators here.

Tips for Effective Communication

Email or Letter

Be concise and specific about what you’re asking for. Mention the specific legislation (like the Medical Nutrition Equity Act or STAT Act) and why it matters to you personally.

 

Phone Call

Prepare a brief script before calling. Identify yourself as a constituent, mention the specific issue or bill, and ask for the representative’s position. Be polite and thank them for their time.

 

In-Person Meeting

Schedule an appointment in advance. Bring concise materials about MSUD and the legislation you’re discussing. Share your personal story and be clear about what action you’re requesting.

 

Social Media

Many representatives are active on social media. Tag them in posts about MSUD awareness and legislation. Keep messages respectful and focused on the issues.

Sample Letter Template

[Your Name]
[Your Address]
[City, State ZIP]
[Your Email]
[Your Phone]
[Date]
The Honorable [Representative’s Name]
[Office Address]
[City, State ZIP]
Dear [Representative/Senator] [Last Name],
I am writing as your constituent and as [someone with MSUD/a parent of a child with MSUD/a concerned member of the MSUD community]. Maple Syrup Urine Disease (MSUD) is a rare genetic disorder that affects approximately 1 in 185,000 newborns worldwide.
[Include a brief personal story about how MSUD has affected you or your family. This personal connection is powerful and helps the representative understand the real impact of the disease.]
I am writing to ask for your support of [specific legislation, e.g., “Medical Foods and Formula Act of 2025” or “the Speeding Therapy Access Today (STAT) Act”]. This legislation is important because [briefly explain why this legislation matters to the MSUD community].
[Include 1-2 specific points about the legislation and how it would help people with MSUD.]
Thank you for your consideration of this important issue. I would appreciate knowing your position on this legislation and would be happy to provide any additional information that might be helpful.
Sincerely,
[Your Name]