Action Alert: Keep Dystonia On List of Eligible Conditions for DOD Research Funding

dystonia legislative advocacyThe Department of Defense Peer Review Medical Research Program is an important source of funding for dystonia researchers. We need your help to ensure our researchers have the opportunity to continue to compete for these research funds. The preliminary list of the eligible conditions for Fiscal Year 2021 was released recently and dystonia was not on the list. There is still time to make to get dystonia included on this list and we need your help.

Please email the offices of your two US Senators and ask that they 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

Below is background on this issue. There is a link you can click below and this will take you to a list of all US Senators.  Please scroll through to find your two Senators.  The links to their websites will be listed next to their names.  If you go to their websites, look for the CONTACT part of the site – complete the your contact information and then copy your letter into the form provided.  You should be able to put the full letter into the form.

Please note, there are sections of the template letter below that are in red – these sections should be personalized – put in the name of your Senators and share your personal story.

Background on this issue for your information

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 – which is what you are!

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

Email (do not phone) your Senators and ask that they support including dystonia on the final list of eligible conditions. We need you to act quickly and please send your email by November 23rd.

Sample Letter

The Honorable (Your Senator)
Address Senate Office Building
Washington, DC 20510

Dear Senator (Name of Your 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]