The NFXF Blog
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!
10 Basic Financial Steps for Special Needs Caregivers — Webinar
Kelly Piacenti joined us for the next topic of the NFXF Webinar Series -10 Basic Financial Steps for Special Needs Caregivers. She shared information to help caregivers get started in preparing for the financial future of their loved one with Fragile X.
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.
NFXF International Fragile X Conferences
The NFXF International Fragile X Conference has grown significantly over the past 40 years, and remains profoundly impactful.
Cincinnati Fragile X Research and Treatment Center
Learn more about the Cincinnati Fragile X Research and Treatment Center, and meet their team of pediatricians, psychiatrists, and psychologists.
Western Massachusetts Chapter Leader attends Autism Connections Conference
Western Massachusetts Chapter Leader attends Annual Autism Connections Conference, which brings professionals and families together to learn more about autism and strategies and therapies to help their individual with autism.
Western Massachusetts Fragile X 8th Annual Hadley Corn Hole Championship
The 8th Annual Hadley Corn Hole Championship, organized by the Western Massachusetts Fragile X chapter on March 3, 2024, marked a day of camaraderie, spirited competition, and impactful fundraising.
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 [...]
Study: Mechanisms and biomarkers of disease progression in Fragile X-associated tremor/ataxia syndrome (FXTAS)
The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with the Fragile X premutation. Males and females ages 50-80 living with the Fragile X premutation, with or without FXTAS, may be eligible to participate. The study includes remote & in-person visits at the University of Kansas.
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.
The Greater Chicago Fragile X Families Raise Awareness at the Brookfield Zoo Tree Trim
The Greater Chicago Fragile X chapter families gathered on a sunny day in November to support the Brookfield Zoo and its annual Tree Trim event, and to raise awareness for Fragile X families everywhere.