Fibrous Dysplasia Included in the Department of Defense Appropriations Bill

Washington DC (December 20, 2019)  Fibrous Dysplasia Included in the Department of Defense Peer-Reviewed Medical Research Program

We are grateful for the support of the Chairs and Ranking Members of the Appropriations Committee and the Defense Appropriations Subcommittee,  the individual members on the Subcommittee and the Senators, as well as their staff. Thanks to their efforts fibrous dysplasia researchers could have the opportunity to compete with over 40 other disease groups for an award from the $360,000,000 included in the Fiscal Year 2020 for the Peer-Reviewed Medical Research Program (PRMRP).  The Fibrous Dysplasia Foundation (FDF) will be working with its Scientific and Medical Advisory Councils to develop materials to ensure meaningful research proposals are presented to benefit the military, veterans, and the fibrous dysplasia/McCune-Albright syndrome (FD/MAS) community.

FDF  has been advocating for FD/MAS patients throughout the year and during Rare Disease Week on Capitol Hill. Earlier this year, FDF launched a successful campaign to include FD/MAS in the Peer-Reviewed Medical Research Program, a congressionally directed research program that could unlock additional federal funding specifically for FD/MAS research. Adrienne McBride, Executive Director states, “The military benefits of studying fibrous dysplasia have implications for treatment of conditions prevalent for those in the Department of Defense, like blast-induced heterotopic ossification and mechanisms of chronic bone pain. ”

The study of fibrous dysplasia provides a unique natural experiment to study key signaling pathways that have implications for treatments of Department of Defense (DOD) prevalent conditions.  Marc Wein MD, Ph.D. of Harvard Medical School shares “Having cared for several patients with fibrous dysplasia and McCune-Albright syndrome, I am well aware of the challenges these patients face, and the fact that major unmet need exists for this disease.” Wein continues, “ More fundamental knowledge is needed in order to develop new cures for this debilitating disease … This (funding) will encourage basic scientists to study FD and identify new treatments for the FD/MAS community. Since we know the genetic cause of this disorder, I am extremely confident that new treatments for our patients will emerge in the near future.”   

Lauren Ruotolo, an FD/MAS patient and FDF Board President is optimistic about the outcomes.  “We are thrilled that FD/MAS has been selected to be considered as one of these critical medical research projects. This is the first step of a journey to a life-changing proposition for all patients who suffer from severe deformities and pain every day. It can change the trajectory we have towards pain management, innovative treatments, and ultimately, a cure that is long overdue for the brave men and women serving in the military as well our veterans, and this rare disease population.”