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 [...]
Healthcare Experiences of African American Women with a Fragile X Premutation
Authors: Andy King, Nadia Ali, Cecelia Bellcross, Fabienne Ehivet, Heather Hipp, Jessica Vaughn, Emily G. Allen An estimated 1 in 291 women carry a Fragile X premutation (PM) and there is little evidence that [...]
Emotion Dysregulation in Fragile X Syndrome
By Mya Jones Authors: Rebecca C Shaffer, Debra L Reisinger, Lauren M Schmitt, Martine Lamy, Kelli C Dominick, Elizabeth G Smith, Marika C Coffman, Anna J Esbensen Summary: A large portion of individuals with Fragile [...]
Dentistry for Individuals with Intellectual Disability
Many families struggle with helping their loved ones with intellectual and developmental disabilities maintain good oral hygiene. We've pulled together some helpful resources on dentistry for families and medical professionals.
10 Things Everyone Should Know About Fragile X Syndrome
The most effective way to support someone living with FXS in any setting is to maximize their focus, cooperation, and enjoyment. Here's more on the strengths and challenges for individuals with Fragile X, and how to make the most of any experience.
Publication Summary: Insight and Recommendations for Fragile X Premutation Associated Conditions from the Fifth International Conference on FMR1 Premutation
This summary gives a broad overview of the main themes discussed at the Fifth International Conference on FMR1 Premutation in early 2023.
Dr. Liz Berry-Kravis Explains Important Updates about the Tetra Trials
Learn more from Dr. Liz Berry-Kravis about the important updates to the Tetra trials to make participation easier!
Fragile X Advocacy Newsletter – November 2023
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!