The Michigan Medical Fragile X Clinic
Highlighting the Fragile X Clinic at the Michigan Medicine Fragile X clinic , a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
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
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 [...]
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.
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!
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.
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!