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HPS Advocacy Request

NOAH Advocacy and Awareness Program

Advocacy for Hermansky-Pudlak Syndrome Research

NOAH is asking you to contact your members of Congress in the House of Representatives and Senate to request that Hermansky-Pudlak Syndrome be added to the list of conditions eligible for research funding through the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP). 

This is not a request for money, it’s only for report language. Congress will determine which eligible conditions to include in the FY25 Defense Appropriations bill later this Summer.

UPDATE (Announced 4/25/24)

PLEASE DON’T DELAY!!! Rep Jenniffer González Colón will close and finalize this letter at 5:00 PM ET on Monday, April 29, 2024.

DEADLINE (Announced 4/25/2024)

All FY25 appropriations programmatic and language requests due to members of Congress by 6:00 PM Eastern, Wednesday, May 1, 2024.

There are two main steps to submit this request to your members of Congress. 

(NOTE: If STEP 1 is not available, proceed to STEP 2. If available, you can do both.)

STEP 1 – Make a formal FY25 Appropriations Request via their website (if available)

  1. Locate your member of Congress and U.S. Senators (3 representatives total – 2 in the Senate, 1 in the House of Representatives) using these websites:
    1. https://www.house.gov/representatives/find-your-representative
    2. https://www.senate.gov/senators/senators-contact.htm
  1. Check their individual websites to see if YOUR members of Congress are accepting FY25 appropriations requests. (NOTE – this is NOT community project funding or congressionally directed spending.)

TIP – once you find your Congress Member’s website, search for “Appropriations Request.”

Examples:

  1. https://www.kaine.senate.gov/appropriations
    • This is Senator Kaine’s appropriations website.
  2. https://wexton.house.gov/services/fy-2025-appropriations-request-form.htm
    • This is Mrs. Wexton’s (VA-10) website and she IS accepting FY25 appropriations requests. Here is the sample information I input into her form:
      (NOTE: Information requested may vary by Congress member. If you need assistance, please contact CureHPS@gmail.com.)
      • Email: Use your personal email address
      • Requesting Entity: HPS Network
      • Contact Person: Use your name
      • Phone Number: Use your phone number
      • Priority Ranking: 1
      • Will this request be submitted by multiple Members of Congress?: YES
      • What type of request is this? REPORT LANGUAGE
      • Subcommittee: DEFENSE
      • Agency: DOD
      • Agency Account: CDMRP/PRMRP
      • Description: The funds provided in the Peer Reviewed Medical Research Program are directed to be used to conduct research in the following areas: Hermansky-Pudlak Syndrome
      • Brief justification of program value in Virginia or VA-10: This report language will authorize life-saving research into Hermansky-Pudlak Syndrome, a rare disease that some individuals with albinism have. The PRMRP report language is critical to enabling DoD medical research grants to help find a cure for Hermansky-Pudlak Syndrome. Importantly, this report language will NOT divert funding away from any other listed conditions or diseases within the PRMRP. (OPTIONAL LANGUAGE)  I would love to meet with the appropriate defense or health staffer to discuss further!
      • Title: Hermansky-Pudlak Syndrome // PRMRP

STEP 2 – Email Your Congress Member

  • Email your Congress Member to provide information regarding your FY25 appropriations request. The best option is to use the “contact” link on YOUR Congress Member’s website.
    • Include the link to the PRMRP & HPS – 1 Pager that has been developed.
    • Include the quill link (below) for them to easily sign on to the letter led by Rep Jenniffer González Colón.
    • (If you are willing.) Request a meeting with the appropriate health or defense staff on your Congress Member’s team to discuss further.
  • Example email/meeting request verbiage:

Dear Representative _______ (or Senator ________),

My name is ____. My family and I live in ______. I am writing with a request for support for report language as Congress enters the FY25 Defense Appropriations cycle. 

Hermansky-Pudlak Syndrome (HPS) is a rare genetic disorder characterized by albinism, visual impairment, platelet dysfunction that results in prolonged bleeding, and pulmonary fibrosis. As a member of the albinism community, I understand the challenges faced by those with a rare genetic condition. In support of fellow community members with Hermansky-Pudlak Syndrome, I am asking for your support to sign on to a letter led by Rep Jenniffer González Colón of Puerto Rico.

For your convenience, I’ve included this PRMRP & HPS – 1 Pager with further details. (OPTIONAL LANGUAGE) I would welcome the opportunity to elaborate further in person with the Health or Defense staffer on Congressman ______’s team. My goal is to increase research opportunities for HPS by including Hermansky-Pudlak Syndrome as an eligible condition in the PRMRP program for FY25.

As a constituent, I’m asking for your support to sign Rep Jenniffer González Colón’s letter: https://quill.senate.gov/letters/letter/15776/opt-in/view/7122cb99-e782-4187-9df9-2d8d4a893b13/

Thank you for your time and consideration. If you would like additional information or to discuss further, please do not hesitate to contact me.

Please don’t delay!
All appropriation requests for F25 are due by Wednesday, May 1st at 6pm ET.

If you have questions or need assistance –
Please contact the HPS Network at CureHPS@Gmail.com

Thank you for taking the time to support the HPS community.

 Here are the signatories thus far:

Rep. Jenniffer Gonzalez-Colon (PR-AL)
Rep. Gerry Connolly (VA-11)
Rep. Sharice Davids (KS-03)
Rep. Andy Kim (NJ-03)
Rep. Josh Gottheimer (NJ-05)
Rep. Bill Posey (FL-08)
Rep. Jonathan Jackson (IL-01)
Rep. Seth Magaziner (RI-02)
Rep. Haley Stevens (MI-11)