The NFXF Blog
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
Project WellCAST: Caregivers of Children with Fragile X Needed for a Research Study
The Kelleher Lab at Purdue University is conducting a virtual, NIH-funded clinical trial called Project WellCAST. Project WellCAST aims to understand how to best support caregivers of children with rare neurogenetic conditions, including Fragile X syndrome.
Summary of the Fragile X Syndrome Basic Science Research session at the NFXF’s 18th International Fragile X Conference
Dr. Anubhuti Goel summarizes the Fragile X Syndrome Basic Science Research session at the NFXF's 18th International Fragile X Conference.
Summary of the Fragile X Premutation Panel Discussion at the 18th International Fragile X Conference
Dr. Connor Maltby, a 2022 Jr. Investigator, summarizes the Fragile X Premutation panel discussion at the NFXF's 18th International Fragile X Conference.
Summary of the Fragile X Messenger Ribonucleoprotein (FMRP) Series at the 18th NFXF International Conference
Dr. Talia Thompson summarizes the Fragile X Messenger Ribonucleoprotein (FMRP) series from the 18th NFXF International Conference