As many of you know, the GBS|CIDP Foundation International is actively involved in political advocacy within the United States to help improve the lives of our patients. We are currently working on getting GBS included on a list of conditions deemed eligible for study under the Department of Defense’s Peer-Reviewed Medical Research Program (PRMRP), which allocates a large sum of money toward research portfolios for diseases included on their list.
We want to get on that list, but we need YOUR HELP! By completing the following Action Alert, you will help us ensure that we can increase research opportunities for GBS. It’s a quick, easy way to get involved and help the GBS|CIDP community move forward! We appreciate you completing this Action Alert by March 10th, 2016.
If you have any questions about this Action Alert or would like to get more involved in advocacy with the Foundation, please contact anna.yankelev@gbs-cidp.org.
!!ACTION ALERT!!
Contact both your Senators and ask that they support the inclusion of “Guillain-Barré Syndrome (GBS)” as condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program during the Fiscal Year (FY) 2017 appropriations process
Background
Each year, the United States Senate crafts an annual Department of Defense (DoD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). In order for a condition to be included, Senators need to support the condition and officially ask for its inclusion. Senators have many competing appropriations priorities and in order for them to support a condition-specific request, they need to be educated and asked to do so by their constituents. (You)
Senators are currently working on the FY 2017 DoD appropriations bill and deciding which conditions will be included on the next PRMRP eligible conditions list. At this critical juncture, please reach out to the offices of your Senators and ask that they “support the inclusion of “Guillain-Barré Syndrome (GBS)” in the DOD PRMRP’s eligible conditions list in FY 2017.”
Take Action
- To contact both of your Senators, please complete the letter below with your GBS Story, Name and Address and remit it to GBS|CIDP’s Washington Representative Philip Goglas II, at Goglas@hmcw.org.
- Phil will compile all letters to your Senators and hand deliver them to their respective Capitol Hill offices and staffers.
- If you have questions or would like to follow up on your letter, please reach out to Phil.
The Honorable _______
________ Senate Office Building
Dear Senator_______,
Thank you for your leadership on patient care and public health issues. I write you today on behalf of the community of individuals affected by Guillain-Barré Syndrome (GBS) to ask that you work with your colleagues on the Senate Defense Appropriations Subcommittee to ensure that “Guillain-Barré Syndrome (GBS)” is listed as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) within the Committee Report accompanying the Senate’s FY 2017 Defense Appropriations Bill.
[Tell your GBS story in 1-2 paragraphs]
Medical literature has found that GBS occurs at a higher rate in U.S. military personnel than the general population. Military personnel, particularly deployed personnel, face an elevated risk of infections, viruses, and other potential triggers for GBS. The PRMRP has been incredibly successful in supporting meaningful research projects for other conditions that disproportionately impact military personnel and occur as a result of military service. Our medical researchers hope to leverage some of these annual opportunities to similarly improve care for GBS patients.
I hope you will work with your colleagues on the Senate Defense Appropriations Subcommittee in support of listing Guillain-Barré Syndrome (GBS) in FY 2017 as a condition eligible for study through the annual list on the Committee Report accompanying the Senate’s FY17 bill.
On behalf of the Guillain-Barré Syndrome (GBS) community, thank you for your time and your consideration of this request.
Sincerely,
[Your Name]
[Your Address]