Department of Defense (DOD) Discontinues Fragile X Research Funding

While in Washington, DC, to help determine how the $330 million appropriated by Congress for 2018 will be spent on DOD’s Peer Reviewed Medical Research Program (PRMRP), FRAXA’s Katie Clapp learned that Fragile X, which has been an approved topic since 2010, is not on the list of approved topics for 2019Upon learning of the lapse, FRAXA announced that it would immediately undertake to have Fragile X reinstated through greater advocacy with key members of Congress.

Help Secure DOD Funding for Fragile X Research for 2020

In order for Fragile X Research to be on the approved topics for the DOD’s PRMRP funding for next  year we need your help. Reach out to your members of congress and ask them to:

  • Reinstate Fragile X Research to the approved topics for the US Department of Defense’s Peer Reviewed Medical Research Program (PRMRP) funding for Fiscal Year 2020.

We invite you to call, email, write a hand-written letter, or even visit with your Senators and Representatives to share with them why this research is important to you, your family and your community.

Contacting Your Member of Congress in Support of Fragile X Advocacy

Guiding the DOD's Fragile X Research Funding

Katie Clapp, president of FRAXA Research Foundation, and Jeffrey Cohen, longtime advocate for Fragile X research and FRAXA supporter, were both nominated by FRAXA to serve as consumer reviewers in the scientific peer review process for the PRMRP. As consumer reviewers, they were full voting members (along with prominent scientists) at meetings to help determine how the $330 million appropriated by Congress for FY2018 will be spent on research.

As consumer reviewers, Cohen and Clapp were asked to represent the collective view of FX patients and their families by assessing the impact of the proposed research on issues such as diagnosis, treatment, and quality of life. Jeffrey Cohen said that, “It was an honor to represent FRAXA and the broader FX community in this process. I was involved in securing this funding for FX in 2010 and will work with FRAXA to get it reinstated.”

The Important Role in Scientific Peer Review of Research Funding

Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of research applications since FY99. Colonel Stephen J. Dalal, Director of the Congressionally Directed Medical Research Programs, expressed his appreciation for the consumer advocate’s perspective during the scientific review sessions. “Consumer advocates are an integral part of the CDMRP’s scientific review process. They provide a key ingredient to the review process, the patient’s perspective, which is real and urgent. The collaboration of Consumer advocates alongside the scientists’ subject matter expertise is a truly unique collaboration that is difficult to find in most medical research programs.”

Scientists applying propose to conduct innovative research that has the potential to profoundly impact the development and implementation of medical devices, drugs, and clinical guidance that will enhance the precision and efficacy of prevention, diagnosis, and treatment across a wide range of disciplines. The PRMRP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking.

More information about the DOD’s PRMRP is available at the website:

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