HELP THE Rare Lung Disease Consortium (RLDC) AS THEY FACE CHALLENGES WITH RECENT GRANT PROPOSAL
CONTACT YOUR CONGRESSIONAL REPRESENTATIVE BY MAY 5, 2025
We’re writing to ask for your help. A very important research grant for rare lung diseases was recently taken out of review by the NIH (National Institutes of Health). Why? Because of a small form—just one page out of 1,000—that wasn’t included on time. In the past, this form could be added later. But now, the rules have changed suddenly, and no one was warned.
This grant could have helped launch new clinical trials, develop better tests, and make it easier for LAM patients to take part in research from home. These changes would speed up discoveries and help bring new treatments to patients faster.
Sadly, this type of grant only comes once every five years. That’s why it’s so important for the NIH to give it a fair review, just like other rare disease grants.
You can help by calling or writing members of Congress before May 5. We’ve included everything you need in the letter below.
Together, we’ve done amazing things—from finding the first treatment for LAM to building a global network of clinics. We can’t let progress stop now.
Please read Dr. Frank McCormack’s letter to learn more—and take action today.
Thank you for standing with us.
SEND AN EMAIL OR LETTER
Below is sample wording you can use or edit to contact your representative.
[Date]
The Honorable [Member’s Name]
[United States Senate/House of Representatives]
[Office Address – only if sending thru postal service]
Washington, D.C. [20510/20515 – only if sending thru postal service]
Dear [Representative/Senator Name],
My name is [Your Full Name], and I am a constituent from [Your City, State]. I am writing to express deep concern over the NIH’s decision to terminate Rare Lung Diseases Consortium’s (RLDC) grant proposal titled “Clinical Trial Readiness for Rare Lung Diseases.”
This five-year, $1 million-per-year proposal supports the RLDC, which is essential in advancing research, diagnostics, and treatment options for patients with rare lung diseases, including lymphangioleiomyomatosis (LAM). A disease that has impacted [me/my loved ones].
I understand on the third round of review an application error was revealed and RLDC was not offered the courtesy to amend their submission per previous protocol. I share in the RLDC’s disappointment in this decision.
Please do not restrict our right to hope and to lead full, healthy lives.
The RLDC is designed to accelerate progress through natural history studies, the development of new therapeutics, physician and patient education, and research training. Without this funding, critical work is at risk of stalling—work that offers real hope to patients and families.
I respectfully ask that you urge the NIH to reconsider this termination and allow this important initiative to move forward.
Sincerely,
[Your Full Name]
[Your Address]
[Your Phone Number]
OR
MAKE A PERSONAL PHONE CALL TO YOUR CONGRESSIONAL REPRESENTATIVE
How to Prepare
1. Identify your congressional leaders.
2. Edit the sample conversation script below for your situation.
3. Read your conversation ahead of time and practice so you have the correct information.
4. Set aside a time to make the call.
5. Call your Representative and Senator.
6. After your call, share about calling online, and tag The LAM Foundation and your members of Congress.
SAMPLE SCRIPT:
I am calling today to let [Representative/Senator name] that as a constituent in your [district/state] and a person living with the rare disease, Lymphangioleiomyomatosis (LAM). I am deeply concerned over the NIH’s decision to terminate Rare Lung Diseases Consortium’s (RLDC) grant proposal titled “Clinical Trial Readiness for Rare Lung Diseases.”
This five-year, $1 million-per-year proposal supports the RLDC, which is essential in advancing research, diagnostics, and treatment options for patients with rare lung diseases, including lymphangioleiomyomatosis (LAM). A disease that has impacted [me/my loved ones].
I understand on the third round of review an application error was revealed and RLDC was not offered the courtesy to amend their submission per previous protocol. I share in the RLDC’s disappointment in this decision.
Please do not restrict our right to hope and to lead full, healthy lives.
I respectfully ask that you urge the NIH to reconsider this termination and allow this important initiative to move forward.
Who to reach out to:
Call or write to the four Co-Chairs of the Rare Disease Congressional Caucus:
• Rep. Gus Bilirakis (R-FL): 202-225-5755
• Rep. Doris Matsui (D-CA): 202-225-7163
• Sen. Roger Wicker (R-MS): 202-224-6253
• Sen. Amy Klobuchar (D-MN): 202-224-3244
If you don’t live in FL, CA, MS, or MN:
• Find your Rare Disease Caucus representative here, or
• Contact your Member of Congress here.
How do you identify your members of Congress?
CLICK HERE to search for your members of Congress. Enter your address into the box below “Find Your Members” (see image below) and select your address.
Your three members will then be listed. It is possible, based on your address, that two Representatives are listed. If you are unsure which one is yours, you can contact both. Most Representatives have an address lookup to limit emails only to their constituents.