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.
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.
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 [...]
Dr. Marcia Braden on the difficulties associated with patients with Fragile X syndrome transitioning from a pediatric to an adult care provider.
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 [...]
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 [...]
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 [...]
NFXF Executive Director Linda Sorensen reflects on her experience at the 16th International Fragile X Conference held in Cincinnati 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 [...]
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 [...]
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.
Limited social skills, social anxiety, and an often narrow range of interests contribute to the difficulties of making new friends.
New survey study to investigate the decision-making process among parents considering enrolling their child with FXS in a clinical drug trial. Fill out a questionnaire which will ask you about factors related to deciding to [...]
I am very excited to see fragile X stakeholders coming from around the world to attend the 2018 NFXF International Fragile X Conference July 11-15 in my hometown, Cincinnati, Ohio. This is the truly greatest meeting [...]
Each year, the National Fragile X Foundation funds one or more summer student research fellowships at $2500 each through the Summer Student Fellowship Research Fund. The student’s work can be in the area of Fragile [...]
