The NFXF Blog
Talking with Your Daughter About Her Fragile X Syndrome Diagnosis
Are you wondering when and how to talk to your daughter about her Fragile X syndrome diagnosis? If so, you are not alone. Here are some strategies to help in talking about your daughter’s FXS diagnosis with her.
5 Steps for Teaching Your Young Adult to Walk to Work
While walking isnʼt always be feasible, we have tips for teaching your young adult to walk to work, which you can adapt for other destinations.
Employment Opportunities for Your Young Adult
Helping your young adult transition out of school and into a new job can be overwhelming, we have some tips and resources to make it a little easier for both of you.
Tips for Beginning the Moving Out Process with Your Young Adult
Helpful tips and insight into various housing options, sources of funding, and points to consider before your young adult's big move.
Let the Awareness Continue!
It looks like in many places we're back to wearing masks, or will be soon. Our family has pulled out all our favorite masks and getting used to them all over again.
Focus Group: Parental Satisfaction with Fragile X Resources
A USC master’s program research study to learn about parents’ satisfaction with resources received when child is diagnosed with FXS.
CDC Awards $4 Million Cooperative Agreement to Build on the Work of the FORWARD FXS Natural History Study!
A $4 million cooperative agreement to “Characterize the Natural History of Fragile X Syndrome to Inform the Development of Intervention and Outcome Measures” was awarded to Dr. Elizabeth Berry-Kravis of Rush University Medical Center by the Centers for Disease Control and Prevention (CDC).
POcKIT Study: At-Home Study for Young Children with FXS
Purdue University is conducting a research study to learn about how genetic, biological, nutritional, and environmental information relates to health and development in Fragile X syndrome.
LIVE: X Strides Closing Ceremony
Join us for the live, virtual closing ceremony of the 2021 X Strides. We will have prizes, awards, and more. It is a can't miss event! Thank you to everyone who helped raise awareness for Fragile X.
NFXF Webinar Series: Collaborate with Us
Collaborate with us. Families learn how behavior, communication, and sensory processing are connected. Further, families are provided with sensory, communication, and behavioral strategies that can be implemented within daily routines. An emphasis on collaborative and evidence-based practices is highlighted.
South Carolina and Wisconsin Proclaim Fragile X Awareness Day
The governors of Wisconsin and South Carolina proclaim July 22, 2021 as Fragile X Awareness Day in South Carolina. Read their proclamations.
NFXF Webinar Series: NIH Fragile X Centers of Excellence
Learn about the Centers for Collaborative Research in Fragile X and FMR1-Related Conditions Program, which supports research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions.