NFXF Executive Director, Hilary Rosselot, and Advocacy Ambassador, Dillon Kelley, attended the CEO Commission for Disability Employment’s Employment Summit and Hill Day in September 2024. It was an inspiring, action-packed few days, and they are excited to share more about their experience and why it matters to the Fragile X community.
Families for Fragile X held their first “Fragile X Walk” event on July 20 in Warwick, Rhode Island. More than 50 family members, caregivers, and the general public participated their first X Strides event.
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.
Learn more about the Cincinnati Fragile X Research and Treatment Center, and meet their team of pediatricians, psychiatrists, and psychologists.
Learn more about the CHOC Fragile X Program, what to expect when you visit, and meet Drs. Sailaja Golla and J. Thomas Megerian.
The annual Fishing for a Cure fundraiser, hosted by Joey Christoff in honor of his son Mitchell, was another great success in 2023! Check out the big fish and the big smiles.
The Fragile X Research and Treatment Center at the UC Davis MIND Institute includes a treatment clinic that sees patients who are not part of their research projects.
Denny and Marcia Haugen know how to throw a party! Their December 9, 2023, second annual Fragile X Christmas party in Waverly, Iowa, was a smashing success.
The annual FORE! Fragile X golf event fundraiser, hosted by the Souder family, has raised over $250,000 for the National Fragile X Foundation. Thank you Jay, Anne and Alec - and your many supporters over the years!
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.
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.
Highlighting the FMR1 and Related Conditions Clinic at the Kennedy Krieger Institute, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
A Message to the Fragile X Community from, Jeffrey M. Dayno, MD, President and Chief Executive Officer of Harmony Biosciences
Zynerba's RECONNECT trial provides flexibility for families with it's new virtual/at-home enrollment option
Meet #TeamWally, the force of family and friends behind Wally Schutz, who are helping to raise awareness of Fragile X syndrome and FMR1-associated conditions and disorders.
