ACTION ALERT: Keep Dystonia Eligible for DOD Research Funding


Contact the office of your Senator serving on the Defense Appropriations Subcommittee and ask that they continue to support the inclusion of dystonia as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program during the Fiscal Year (FY) 2019 appropriations process.

The list of Senators we urgently want to contact is listed below.  Please read through this information and take action today.

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 nearly $300 million in federal research funding each year.

Senators are currently working on the FY 2019 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 2019.” 

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 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).

Senate Defense Appropriations Subcommittee Members
Richard Shelby, Alabama
Lisa Murkowski, Alaska      
Diane Feinstein, California
Brian Schatz, Hawaii
Dick Durbin, Illinois
Jerry Moran, Kansas
Mitch McConnell, Kentucky         
Susan Collins, Maine   
Thad Cochran, Mississippi             
Roy Blunt, Missouri
Steve Daines, Montana                                            
John Tester, Montana
Tom Udall, New Mexico
Jack Reed, Rhode Island
Lindsay Graham, South Carolina       
Lamar Alexander, Tennessee
Patrick Leahy, Vermont
Patty Murray, Washington
Tammy Baldwin, Wisconsin

[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 2019 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 2019 appropriations process.  

I hope you will work with your colleagues in support of keeping dystonia in the current draft list of eligible conditions for study as you finalize the current FY18 appropriations and once again list dystonia in FY 2019 as a condition eligible for study through the annual list on the Committee Report accompanying the Senate’s FY19 bill.
On behalf of the dystonia community, thank you for your time and your consideration of this request.

[Your Name]
[Your Address]

Accelerating Research & Inspiring Hope

The Dystonia Medical Research Foundation (DMRF) has served the dystonia community since 1976. Join us in our global effort to find a cure.