The NFXF Blog
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 [...]
Enjoying the Fall (including Halloween!) with Sensory Challenges
Halloween can offer challenges for children with Fragile X syndrome. Here we present activity ideas for you to consider, but the important point is to find what works for your family—and maybe it will lead to a new tradition.
Concept and Use of a Sensory Diet
Leading pediatric occupational therapists, Tracy Stackhouse and Sarah Scharfenaker, provide an overview of the concept and use of sensory diet including a downloadable sensory diet template, and an example of a completed template for a sample patient.
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 [...]
Moving from Pediatrics to Adult Services — Webinar
Dr. Marcia Braden on the difficulties associated with patients with Fragile X syndrome transitioning from a pediatric to an adult care provider.
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 [...]
Reflections on the NFXF 16th International Fragile X Conference in Cincinnati
NFXF Executive Director Linda Sorensen reflects on her experience at the 16th International Fragile X Conference held in Cincinnati 2018.