The NFXF Blog
Marner Family Hosts 4th Annual QC Fragile X Golf Outing
The annual QC Fragile X golf outing, hosted by the Marner family, has been an incredibly inspiring demonstration of support. Thank you Andrea and Kevin - and your many supporters over the past four years!
2023 Industry Updates — Webinar
The NFXF hosted a Fragile X research updates webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.
Fragile X Clinic at Children’s Hospital Colorado
Highlighting the Denver Fragile X Clinic at Children's Hospital Colorado, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
The 2023 RJH Summer Scholar Presentations Are Now Live!
We asked our 2023 NFXF-funded Randi J Hagerman Summer Scholars to summarize their summer project in a 15-minute video presentation, and here they are!
Thank You Donors — Your Support is Making a Difference
NFXF Executive Director Hilary Rosselot shares recent program accomplishments in 2023 thanks to donors' support.
Center for Autism and Neurodevelopmental Disorders (CANDO)
Highlighting the Fragile X Clinic CANDO at UMass, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
Reproductive Health — Webinar
Drs. Heather Hipp and Victoria Wilkins joined us for an informative webinar on the topic of Reproductive health. This is a broad topic, covering the physical and emotional components of areas like puberty, sexuality, reproductive options, and family planning.
Study: Single Dose Study for Adult Women and Men with FXS
Dr. Craig Erickson at Cincinnati Children’s Hospital Medical Center is conducting a clinical trial to learn about if medication can change the brain’s response to sound, which may be abnormal in FXS.
DOD grant awarded for a FXTAS trial
PureTech Health has been awarded a DOD 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).
The University of Miami Miller School of Medicine South Florida Fragile X Clinic
Highlighting the South Florida Fragile X Clinic, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
Education Strategies for Success — Webinar
Educational strategies are not just helpful for school-aged children! The one-hour Q&A panel discussion, moderated by Hilary Rosselot, includes panelists with expertise and suggestions to support individuals living with Fragile X throughout the lifespan!
2023 Randi J. Hagerman Summer Scholars Meet the NFXF Team
2023 Randi J. Hagerman Summer Scholars Aditi Majahan, Alexandra Singleton and Maureen Butler met with team members from the NFXF to share the progress of their research.