Dillon Kelley: Standing Up to Fragile X in Congress
If you have ever spent more than 5 minutes with Dillon Kelley, you know two things—you know about Fragile X and you know that, one day, Dillon Kelley will be a member of Congress.
Steve and Shirley Kaufman are determined to Stand Up to Fragile X
Steve was diagnosed with FXTAS 8 years ago, and since then, he and his family have provided significant financial support to FXTAS programming at the NFXF. They are supporting our goal to build a worldwide consortium of FXTAS clinics to help improve the rate of diagnosis and the delivery of current treatments. This will also set us up to be ready to conduct future clinical trials for new treatments.
How to Honor the Two Victims with Fragile X Syndrome of the Pittsburgh Shooting
From Jay Souder, NFXF Board President, on behalf of the National Fragile X Foundation: As a parent of an adult son with Fragile X syndrome, the news coming out of Pittsburgh that two of the [...]
Early Check for Fragile X Syndrome Launches in North Carolina
Early Check is a new research study, led by RTI International and a group of distinguished partners, is now available for newborn babies in North Carolina. Fragile X syndrome is included in the screening. From [...]
FXTAS Clinic Directory Now Available
Looking for a FXTAS clinic? A directory of clinics around the world is now available here. All of the clinics are part of the International FXTAS Consortium (IFC). The IFC was co-founded in 2017 by [...]
X Strides Heartland Walk/Run 2018 Fundraiser Delivers Awareness and Fun in Support of Fragile X Families
Over 140 runners, walkers, and volunteers converged at the beautiful Briarwood Golf Club on Saturday, September 29, 2018, for the first annual X Strides Heartland event, organized by Nancy Carlson and Jeff Sexton. The [...]
Support the NFXF Through the Combined Federal Campaign
You can support the National Fragile X Foundation through the Combined Federal Campaign (CFC), the federal government's charitable giving program that automatically deducts your contributions to your charity of choice each pay period. According to [...]
FX-LEARN Clinical Trial for Fragile X Syndrome: Frequently Asked Questions
The following FAQ refers to the FX-LEARN: Language Learning in Children with FXS trial. What is Different About This Trial? This is a trial studying the effects of an investigational medication on learning in [...]
Visiting a FXTAS Researcher
On July 28, 1028, the University of Central Florida College of Medicine hosted an open house for families affected by Fragile X-associated tremor and ataxia syndrome (FXTAS) to highlight their research. Missy Zolecki, NFXF [...]
Friends of Fragile X Continues Support for the NFXF
A special thank you to Joy and David Justus and the Friends for Fragile X for their continued support of the National Fragile X Foundation. They announced $70,000 in donations to Fragile X and Autism [...]
Minnesota’s Inaugural X Strides
The weather was beautiful for our first X Strides walk, and we had an encouraging turnout! We had 50 people register online and 20 people register on Saturday. It was the best turn out that [...]
South Carolina Fragile X Awareness Day 2018
July 22, 2018 is Fragile X Awareness Day in South Carolina thanks to the Governor's proclamation. A special thank you to NFXF South Carolina Chapter Leaders Roger and Faye Kuperman for their hard [...]
2018 CSN Awards
At the 16th NFXF International Fragile X Conference, three awards for outstanding leadership and work serving Fragile X families in the NFXF Community Support Network were presented. Please congratulate and, more importantly, thank the [...]
The NFXF Conference, Research Opportunities, and a Fragile X Q&A — Webinar
A discussion of the upcoming conference including how to get the most out of your time, what to look for, and how to have a great time and connect with the community.
Partnering with the MIND Institute
Last Sunday morning I had the pleasure of joining several members of our board of directors as well as local New York City families as we came together for a conversation about the hopes, [...]