The NFXF Blog
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.
We’re Urging Lawmakers to Support the Accelerating Kids’ Access to Care Act
The NFXF is one of 215 organizations urging lawmakers to support the Accelerating Kids’ Access to Care Act. Every child deserves the best care—regardless of who they are, where they live, or their family’s income.
Antisense Oligonucleotide Rescue of CGG Expansion–Dependent FMR1 Mis-Splicing in Fragile X Syndrome Restores FMRP
One of the most exciting advancements being done in Fragile XS research today is antisense oligonucleotide (ASO) therapy.
Fragile X Advocacy Newsletter
Read and share the first edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Share Your Daily Living Strategies
Please share your daily living tips, tricks, or strategies that have be successful for you, so that we can share with the community!
RECONNECT Trial Announces New AT-HOME Option for Participation
RECONNECT Trial Announces New AT-HOME/VIRTUAL Option for Participation