Fighting for Fragile X Funding Eligibility
During the in-person training for Advocacy Day, the topics, or “asks,” we were collectively supporting were shared and explained.
One of the asks was to continue to include Fragile X as one of the topic areas eligible for funding by the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP), through the Congressionally Directed Medical Research Programs (CDMRP). This program was established in fiscal year 1999 and has “supported research across the full range of science and medicine with an underlying goal of enhancing the health, care and well-being of military Service Members, Veterans, retirees and their family members.”
The program has grown substantially with congressional appropriations of $370 million for fiscal year 2022. The PRMRP solicits research applications under the topic areas directed by Congress. Only those topic areas are eligible to apply for these funds. 2010 was the first year Fragile X was included as a topic area.
The review process is a two-tiered approach and includes scientist and consumer reviewers. Consumer reviewers are a patient, survivor, family member or caregiver of people living with the disease, injury, or condition that is funded by a program. The NFXF has nominated individuals in our community, both professionals and consumers, to be a part of the reviews.
This past fall, I was invited to be a consumer reviewer as a part of the Programmatic Panel. What an incredible honor — without hesitation, I accepted. After asking for over a decade for Fragile X to be included, it was enlightening to be a part of this Programmatic Panel. I was inspired by the dedication of all who are a part of this process. From the researchers who invested countless hours of time submitting their proposals, to the dedicated scientific, clinical, and consumer reviewers who shared their feedback.
Prior to arriving, I reviewed the proposals and was prepared to share my feedback as a consumer. I traveled to the greater Washington, D.C., area to participate. Over the course of two days, I, along with other panelists, discussed the previously submitted peer and consumer reviewer’s feedback. We also shared our perspectives, and each application was voted on for funding recommendations.