By Hilary Rosselot
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 (CDMRP) 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-co-principal 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.
about
Hilary Rosselot
Hilary joined the NFXF team in 2019. Prior to joining the NFXF team, she worked at the Cincinnati Fragile X Research and Treatment Center for over five years. She has experience as a clinical research coordinator across many types of clinical trials and served as the clinical research manager for the Cincinnati program. She earned a bachelor’s degree in psychology, a master’s, and is a SOCRA certified clinical research professional (CCRP). She enjoys time with family and friends, a great book, a strong cup of coffee and, of course, a good laugh!
learn more
Research Funding Opportunity from CDMRP/PRMRP for Fiscal Year 23 | NFXF (fragilex.org)
Explanation of FY23 CDRMP/PRMRP opportunities
Fragile X Advocacy Newsletter – October 2024
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
A Reflection on the CEO Commission’s 2024 Hill Day
NFXF Executive Director, Hilary Rosselot, and Advocacy Ambassador, Dillon Kelley, attended the CEO Commission for Disability Employment’s Employment Summit and Hill Day in September 2024. It was an inspiring, action-packed few days, and they are excited to share more about their experience and why it matters to the Fragile X community.