ACTION ALERT: Keep Dystonia in DOD Medical Research Program

dystonia legislative advocacyIf you are in the States of AL, IL, KY, VT, TN, CA, ME, WA, AK, RI, MO, MT, KS, NM, ND, AR, HI, SC, or WI please send a message to your Senator who serves on the Senate Defense Appropriations Subcommittee today!   

Contact the office of your Senator serving on the Defense Appropriations Subcommittee and ask that they continue to support the inclusion of “dystonia” as condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program during the Fiscal Year (FY) 2021 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)

As a result of grassroots outreach, the Senate has recognized dystonia as a condition eligible for study annually for a number of years. This support allows dystonia medical researchers to compete for $350 million in federal research funding each year.

Senators are currently working on the FY 2021 DOD appropriations bill and deciding which conditions will be included on the next PRMRP eligible conditions list. Being included on the list one year is no guarantee of being included again in the next year. At this critical juncture, please reach out to the offices of your Senators and ask that they “once again support the inclusion of “dystonia” in the DOD PRMRP’s eligible conditions list in FY 2021.”

Take Action

  • Please consult the list below and see if one of the Senators from your state serves on the Defense Appropriations Subcommittee.
  • E-mail DAN’s Washington Representative, Philip Goglas II, at Goglas@hmcw.org and let him know that you would like to reach out to your Senator in this regard. Please include the state you live in in your e-mail as Phil will use this information to identify your Senator and their appropriate staffer.
  • Complete the letter below with your dystonia story and Phil will send your completed letter to your Senator’s health staffer.
  • If you are well-acquainted with the staff in your Senator’s office, please feel free to send them a personal e-mail or coordinated group message through Phil (we want to make sure they do not receive multiple or overwhelming e-mails on this issue).

Message Template:

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 dystonia to ask that you work with your colleagues to ensure that “dystonia” is once again 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 2021 Defense Appropriations Bill.

[Tell your dystonia story in 1-2 paragraphs]

Medical literature associates the onset of dystonia with traumatic injury, particularly traumatic head/brain injuries. Our men and women in uniform face a disproportionate risk of developing dystonia as a result of an injury sustained during their military service. Over recent years, the PRMRP has funded many dystonia research projects that have been crucial to increasing our scientific understanding of this condition. In the interest of further improving care for our dystonia-affected veterans, please once again support the inclusion of dystonia as a condition eligible for study through the PRMRP during the FY 2021 appropriations process.

I hope you will work with your colleagues in support of once again list dystonia in FY 2021 as a condition eligible for study through the annual list on the Committee Report accompanying the Senate’s FY21 bill.

On behalf of the dystonia community, thank you for your time and your consideration of this request.

Sincerely,

[Your Name]

[Your Address]

Senate Defense Appropriations Subcommittee Members

Sen. Richard Shelby (R-AL), Chair                           Sen. Richard Durbin (D-IL), Vice Chair

Sen. Mitch McConnell (R-KY)                                  Sen. Patrick Leahy (D-VT)

Sen. Lamar Alexander (R-TN)                                   Sen. Diane Feinstein (D-CA)

Sen. Susan Collins (R-ME)                                        Sen. Patty Murray (D-WA)

Sen. Lisa Murkowski (R-AK)                                    Sen. Jack Reed (D-RI)

Sen. Roy Blunt (R-MO)                                             Sen. Jon Tester (D-MT)

Sen. Jerry Moran (R-KS)                                            Sen. Tom Udall (D-NM)

Sen. John Hoeven (R-ND)                                         Sen. Brian Schatz (D-HI)

Sen. John Boozman (R-AR)                                      Sen. Tammy Baldwin (D-WI)

Sen. Lindsey Graham (R-SC) 


The Dystonia Medical Research Foundation is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.