Advocates, your hard work paid off!
Year after year we advocate with our Members of Congress to keep Fragile X as an eligible condition for funding from the Department of Defense (DOD) Congressionally Directed Medical Research Program (CDMPR) Peer Reviewed Medical Research Program (PRMRP). We have to have at least one champion suggest Fragile X stay on the list in order to be eligible for funding. For several years now, NFXF Advocates have been able to secure a champion and keep Fragile X on the list.
That work as paid off; PureTech Health has been awarded a grant of up to $11.4 million from the DoD for their trial of LYT-300, oral formulation of allopregnanolone, in people with Fragile X-associated tremor/ataxia syndrome (FXTAS). PureTech is working alongside the team at the UC Davis MIND Institute with Dr. Randi Hagerman as a co-principle investigator. The first year of the DoD grant is focused on identifying biomarkers. If all goes well, the research will move forward.
FXTAS has no targeted treatments and families are anxiously awaiting relief. This grant is an incredible step in the right direction.
Congratulations to the PureTech and UC Davis Mind Institute teams on this funding! And thank you, Advocates, for your tireless efforts to improve the lives of those living with Fragile X.