The 2024 RJH Summer Scholar Presentations Are Now Live!
We asked our 2024 NFXF-funded Randi J Hagerman Summer Scholars to summarize their summer project in a 15-minute video presentation, and here they are!
About Me Template- For School or Work Environments
Use our customizable "About Me" template to help describe Fragile X to your schoolmates or colleagues.
Embracing the Xtraordinary: Inspiration from the Fragile X Community
Listen to Carly Dolan, Jill Dolan, David Tillman, and Tamaro Hudson share their Xtraordinary stories during our Keynote at the 19th NFXF International Fragile X Conference.
A Message from Harmony Biosciences Before the 19th NFXF International Fragile X Conference
Here's a message from our friends at Harmony Biosciences in advance of the 19th NFXF International Fragile X Conference.
Research Funding Opportunity: RFA-HD-25-002: Centers for Collaborative Research in Fragile X and FMR1-Associated Conditions
In June 2024, NIH published RFA-HD-25-002: Centers for Collaborative Research in Fragile X and FMR1-Associated Conditions. If you or someone you know are researching FXS and/or FMR1-associated conditions, this could be a great funding opportunity for you!
Fragile X Advocacy Newsletter – June 2024
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Addressing Aggressive Behavior in Adolescents and Adults with Fragile X Syndrome
New family-friendly content is available that will provide families and other caregivers with a better understanding of the possible causes of aggressive behavior along with recommendations for how to respond during and following an aggressive incident.
Your participation in FORWARD is meaningful and increases awareness about Fragile X Syndrome!
Two FORWARD papers published in American Journal of Medical Genetics Part A , were the top 10 most-cited papers published during the 2022-2023 period!
Harmony Biosciences & RECONNECT Team Join FXS Community in Advocacy
Over the past six months, the Harmony team has worked alongside their colleagues at Zynerba and the RECONNECT trial to create and deepen existing ties with members of the Fragile X syndrome (FXS) community.
NFXF Gene Therapy Community Survey
Help the NFXF - share your thoughts on gene therapy.
FMR1 Carriers Report Executive Function Changes Prior to Fragile X-Associated Tremor/Ataxia Syndrome: A Longitudinal Study
Authors: David Hessl, PhD, Karina Mandujano Rojas, BS, Emilio Ferrer, PhD, Glenda Espinal, BS, Jessica Famula, MS, Andrea Schneider, PhD, Randi Hagerman, MD, Flora Tassone, PhD, and Susan M. Rivera, PhD Summary: People with [...]
Peer-Reviewed Medical Research Program’s FY 24 Funding Opportunities for Researchers — Webinar
Dr. Kathryn Argue share tips for applying for PRMRP funding with Fragile X professionals.
Research Funding Opportunity from CDMRP/PRMRP for Fiscal Year 24
Announcing FY 2024 federal research funding opportunities across six award categories available for all Fragile X-associated conditions and disorders.
Study: Recording the Experiences of Black and Hispanic Mothers who have Children with Fragile X Syndrome
Are you a Black or Hispanic woman raising a child with Fragile X syndrome? Researchers want to hear about your experiences. The South Carolina Family Experiences Lab is conducting 30-minute interviews to learn about [...]
Baclofen-associated neurophysiologic target engagement across species in Fragile X syndrome
Authors: Carrie R. Jonak , Ernest V. Pedapati, Lauren M. Schmitt, Samantha A. Assad , Manbir S. Sandhu, Lisa DeStefano, Lauren Ethridge, Khaleel A. Razak, John A. Sweeney , Devin K. Binder and Craig [...]