The NFXF Blog
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.
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.
Building Social Supports: A Guide for Parents
Limited social skills, social anxiety, and an often narrow range of interests contribute to the difficulties of making new friends.