The NFXF Blog
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.
The Fragile X Clinic at Texas Children’s Hospital
Highlighting the Fragile X Clinic at Texas Children's Hospital, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
A Reflection on the CEO Commission’s 2023 Hill Day
NFXF Board Member Jed Seifert recently represented the NFXF at the CEO Commission's Hill Day. Jed shares his reflections on this powerful experience.
Enter the 2023 Rare Artist Contest by EveryLife Foundation
Rare Artist 2023 Contest is open for submissions until August 31. The Rare Artist Program was established in 2010 to exhibit the unique gifts of individuals impacted by rare disease to tell their story through art.