Researchers and Advocates Move Forward with Department of Defense Funding

One of the biggest initiatives that FDF is working on right now is the Peer Reviewed Medical Research Program (PRMRP). The PRMRP is a huge research opportunity that our team of advocates have unlocked for FD/MAS researchers through the US Department of Defense’s Congressionally Directed Medical Research Program (DOD CDMRP). Thanks to the tireless efforts of advocates who met with their representatives, FD is among the disease topic areas included in the 2020 defense appropriations language. This win unlocks the possibility of bigger funding streams than the FD/MAS community has ever been able to access before and allows FD/MAS researchers into a pool of other designated disease area researchers who can compete for 360 million dollars of research funding.

We heard the good news that FD was included as a disease topic in the fall, so what’s been happening since then?

In January, FDF worked with PRMRP General Dynamics Information Technology Program Staff to learn how the CDMRP involves advocates (people with real-life experience with the disease) in the review of grant applications. Twelve individuals have been nominated and interviewed to potentially participate on FY20 panels reviewing the topic of FD. They were selected in part because of their advocacy work and involvement and involvement with FDF.

Now that our advocates have done the initial legwork, it’s time for researchers to capitalize on this incredible opportunity. FDF has also worked to ensure that the research community is prepared to apply and secure this funding. FD/MAS researchers will be competing against the 40+ other disease topic areas that have been written into this bill, so it’s important that researchers from our community understand the program and granting mechanisms as fully as possible.

Preparing Researchers  to Apply for Funding

FDF has been reaching out to as many researchers as possible, including previous applicants to Team FD’s Million Dollar Bike Ride grants, to encourage them to prepare their applications. Our world-renowned Scientific Advisory Council communicated early on in the process and found colleagues with experience with this specific Department of Defense program. FDF is very grateful to Todd McKinley, MD, Professor of Orthopedic Surgery and Lilian Plotkin Ph.D., Associate Professor of Anatomy and Cell Biology, both of Indiana University School of Medicine, who led a webinar discussion for all FD/MAS researchers interested in applying for funding. Both Drs. McKinley and Plotkin have previously applied for PRMRP funding and have also served as reviewers in the peer-review process. Dr. McKinley has received PRMRP grants before for orthopedic research, and both researchers were able to offer wonderful insights into the granting process and the program itself.

Over the course of the spring, researchers will submit a pre-application, and some will be invited to submit a full application. Those proposals will be reviewed both by consumer-reviewers from the patient community and by scientific and topic area experts. FDF believes that this research funding will bring meaningful answers, not only for the FD/MAS community but also to other populations such as veterans and those in the military community. The study of FD/MAS can lead to new insights on bone pain and healing which are significant concerns for the military community and the Department of Defense. We hope that many of our community’s researchers will be granted funding and that their work will yield real answers for all of us.

Thanking Representatives and Ensuring Future Opportunities

Our community’s attention must now return to advocacy and the work of ensuring that FD is included in this appropriations bill for next year’s budget. There’s no guarantee that FD/MAS research will receive funding, or that we’ll have this opportunity again. What we do know is that we need to continue to thank our representatives, tell our stories, and advocate for more research in order to continue to make these incredible opportunities continue to happen. If you’d like to become involved, please reach out to Tovah Burstein via tburstein@fibrousdysplasia.org.