How to Contact Congress staffers:
Every day, families like ours living with Classic Galactosemia depend on the National Institutes of Health (NIH), the Food and Drug Administration (FDA), and the Centers for Medicare & Medicaid Services (CMS). These agencies fund vital research, review potential treatments, and ensure access to care for our rare disease community.
With proposed budget cuts threatening all three, your voice matters now more than ever. The good news? You don’t need to be a professional advocate to make an impact—you just need your story and a few simple steps.
📄 Step 1: Start with the Draft Letter
We’ve created a template letter to help you get started. All you have to do is personalize it.
Here's how:
Add your name, address, email, and phone number
Mention your connection to galactosemia (e.g., “I’m the parent of a child with Classic Galactosemia.”)
Include a sentence or photo to make it personal—your child’s story is powerful
Save it as a PDF or copy it directly into an email
If you'd like help customizing your letter, we’re happy to help!
Step 2: Find Your Members of Congress
Each person has 2 U.S. Senators and 1 Representative in Congress.
🔎 Use these tools to find them:
www.senate.gov/senators
www.house.gov/representatives/find-your-representative
Enter your ZIP code to get the names and websites of your elected officials.
Step 3: Find the Right Staffer
You’ll want to reach the Health Legislative Assistant (Health LA) or the Legislative Correspondent (LC) in each office. These are the staffers who handle healthcare policy—and they’re the ones reading your message.
Options to find them:
Option A: Check your Representative or Senator’s website.
Go to their official page and look for the “Contact” or “About” section. Some offices list staff names and emails.
Option B: Use Soft Edge or Google.
Soft Edge offers a free personal-use version of their advocacy software. You can also Google search terms like:
"Senator Smith legislative staffer site:senate.gov"
or
"Rep Jones health legislative assistant site:house.gov"
Option C: Use LegiStorm
Create a free account and search for your member of Congress. Look under staffers for anyone with “health” or “legislative assistant” in their title.
📧 Step 4: Format the Email
Once you have the staffer’s name, you’re ready to send the message.
Email formatting:
Senate:
firstname_lastname@senate.govHouse:
firstname.lastname@mail.house.gov
If you’re unsure of the staffer’s direct email, you can send your message to the general office inbox and request it be forwarded to the Health LA.
Sample subject line:
Constituent Urging Support for NIH, FDA, CMS Funding – Galactosemia Family
Paste your letter into the email body or attach your PDF and write a short message like:
Dear [Staffer Name],
I’m a constituent from [City, State] and the parent of a child with Classic Galactosemia. I’m writing to urge the Senator/Representative to oppose cuts to NIH, FDA, and CMS.
Please see my attached letter. Thank you for your time and consideration.
Sincerely,
[Your Name]
[Phone / Email]
💬 Step 5 (Optional): Ask for a Call or Zoom Meeting
Want to go a step further? Request a brief meeting with the staffer. Many are open to short Zoom calls or phone chats, especially when you’re a constituent with a powerful story.
Say something like:
“I’d appreciate the opportunity to speak for just 15 minutes about how this issue affects our family directly.”
You Can Make a Difference
You don’t have to be a policy expert to have an impact. Your story—your child’s story—is more powerful than any statistic.
With just 30 minutes, you can help protect the future of research, treatment, and care for our rare disease community.
Together, we are stronger.
Need help or want to submit your letter through the Galactosemia Foundation?
Reach out to us—we’ll walk with you every step of the way. gillian.sapia@galactosemia.org
