The NFXF Blog
You Spoke, We Listened: The Completely At Home RECONNECT Clinical Trial –Participate in Research Without the Stress of Traveling
You Spoke, We Listened: The Completely At Home RECONNECT Clinical Trial –Participate in Research Without the Stress of Traveling
NFXF Western Massachusetts Chapter Hosts Cork and Cafe 2024
More than 50 friends and supporters gathered on September 29 to eat great food, taste various wines, bid for prizes, and raise awareness and funds to support the Fragile X community.
Now Live: Two FXTAS webinars with the National Ataxia Foundation
By Hilary Rosselot Partnering with the National Ataxia Foundation to Raise Awareness for FXTAS In September, we partnered with the National Ataxia Foundation (NAF) on a webinar series about FXTAS. Our first webinar was [...]
FXS TECH Study
Researchers at Rush University Medical Center are working on technology to improve how to identify and track progress in children living with autism and Fragile X syndrome. The study is currently recruiting children ages 18 months to 5 years, and 12-18 years.
The People Who Are the NFXF
So many people - volunteers, team members, donors, advocates, including self-advocates, clinicians and clinic teams, researchers, therapists, educators, counselors, advisors and others - over the past 40 years have helped make the National Fragile X Foundation what it is today!
The Dos & Don’ts of Participating in a Clinical Trial
We live in a day and age of social sharing, and that is not going anywhere. However, when we participate in a clinical trial, we have to understand that we cannot share everything in order to protect the integrity of the trial.
Study: Web Intervention for Parents of Youth with Genetic Syndromes (WINGS)
Researchers at the Autism Assessment, Research, Treatment & Services (AARTS) Center at Rush University Medical Center are currently conducting a fully-virtual research study that is testing two telehealth interventions that are designed to help parents of children with genetic syndromes and intellectual disabilities gain strategies to manage challenging behaviors.
Neural Underpinnings of the Relationship Between Cognition and Gait Dysfunction in Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
Movement disorders researchers at Rush University Medical Center are conducting a research study to learn about brain activation in people living with FXTAS during tasks like walking and thinking. This study is currently recruiting adults ages 50+ who are living with FXTAS.
Happy National Disability Employment Awareness Month!
October is a time that draws the attention of the nation on critical issues related to disability employment, bringing awareness to a subject that we know has importance all year round. We know many individuals living with Fragile X want to work and though some do, not everyone who wants a job has found one that best fits their strengths and skillsets. We are determined to help you educate yourself on the supports that exist and how to best advocate for you or your loved ones needs in the workplace.
Fragile X Advocacy Newsletter – October 2024
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Marner Family Hosts 5th Annual Quad Cities Fragile X Golf Outing
The annual QC Fragile X golf outing, hosted by the Marner family, has been an incredibly inspiring demonstration of support. Thank you Andrea and Kevin - and your many supporters over the past five years!
A Reflection on the CEO Commission’s 2024 Hill Day
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.