Action Alert: Take Action to Protect Dystonia Research

dystonia legislative advocacyIf you live in MT, IL, VT, CA, WA, RI, HI, NH, AL, KY, ME, AK, SC, MO, KS, ND, or AR we need your help ASAP.

We are asking you to reach out to your Senator, because they serve on the Senate Defense Appropriations Subcommittee (the list is below), to ask them to 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) 2022 appropriations process.

To make it as convenient as possible for you, please email Jackson Rau at: rau@hmcw.org  and Jackson will send you the name and email contact information for the staff person who works for one of these key Senators.  You do not have to go to the Senator’s website – you just have to email the staff person Jackson sends you.

Senate Defense Appropriations Subcommittee Members

Jon Tester (D-Montana), Chair
Richard Shelby (R-Alabama), Vice Chairman
Richard Durbin (D-Illinois)
Mitch McConnell (R-Kentucky)
Patrick Leahy (D-Vermont)
Susan Collins (R-Maine)
Dianne Feinstein (D-California)
Lisa Murkowski (R-Alaska)
Patty Murray (D-Washington)
Lindsey Graham (R-South Carolina)
Jack Reed (D-Rhode Island)
Roy Blunt (R-Missouri)
Brian Schatz (D-Hawaii)
Jerry Moran (R-Kansas)
Tammy Baldwin (D-Wisconsin)
John Hoeven (R-North Dakota)
Jeanne Shaheen (D-New Hampshire)
John Boozman (R-Arkansas)

Take Action

  • Please consult the list above and see if one of the Senators from your state serves on the Defense Appropriations Subcommittee.
  • E-mail Jackson Rau at Rau@hmcw.org.  (Jackson works with Dystonia Advocacy Network (DAN)’s Washington Representative, Philip Goglas II.)  Jackson will send you the contact information for who you should send it to in your Senator’s office. Please include the state you live in in your e-mail to help Jackson send you the information as quickly as possible.
  • Complete the letter below with your dystonia story (remember to delete the sample given), email it to the health staff person provided to you by Jackson Rau and please copy Jackson on the email so he can follow-up.  (Rau@hmcw.org)

SAMPLE COMMUNICATION:

Subject line for email:  Request for Dystonia to continue to be included on the DOD PRMRP list

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 2022 Defense Appropriations Bill.

[Insert your dystonia story in 1-2 paragraphs]

Medical literature associates the onset of dystonia with traumatic injury, particularly traumatic head/brain injuries. Our service members 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 2022 appropriations process.

I hope you will work with your colleagues in support of once again list dystonia in FY 2022 as a condition eligible for study through the annual list on the Committee Report accompanying the Senate’s FY22 bill.

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

Sincerely,
[Your Name]
[Your Address]