The NFXF Blog
How You Can Stand Up to Fragile X
When people ask me, What do you do? I tell them I help people living with a rare genetic disorder live their best lives — every day. After a pause, their response is often something along the lines of, Wow… that sounds really meaningful! I nod my head [...]
Managing Anxiety … What Works And Why?
Most children who come to see me have a combination of developmental delays, communication challenges and symptoms of anxiety, resulting in frequent tantrums. It is common for parents to share details about their daily struggles.
8 Tips on Transitioning Your Child to Adult Services
Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Here we present eight tips based on research from Morgridge College of Education at the University of Denver.
Meet Riley Lynch
My husband and I were told Riley would never walk, talk, or do much of anything. One doctor went so far as to say he wasn’t even going to live. My husband and I ignored all the comments and continued to advocate for Riley.
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 [...]
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 [...]