A concern for parents of children with Fragile X syndrome is their level independence as an adult. This is Clay and his mother June's story.
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).
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.
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.
The governors of Wisconsin and South Carolina proclaim July 22, 2021 as Fragile X Awareness Day in South Carolina. Read their proclamations.
Dr. Anne Wheeler will provide an overview of the literature on stress vulnerability in women with a premutation, describe how mindfulness-based techniques can be helpful for stress-reduction, allow for some experiential practice of these techniques, and provide practical resources for increasing mindfulness, reducing stress, and improving overall well-being.
his year, as part of our awareness efforts, we are sharing about individuals with Fragile X syndrome who are working – paid, volunteer, full-time, part-time, and more. We want to raise awareness of the value of employment of individuals with intellectual and developmental disabilities for the employee, employer, and their coworkers.
Dr. Marcia Braden joins us to discuss Females and Fragile X syndrome (FXS). This webinar helps you better understand the features associated with the syndrome. Information processing, cognitive strengths and weakness as well as social issues are identified. Strategies to address common challenges are also discussed.
On behalf of the NFXF Board of Directors, I am excited to welcome our newest class of directors for 2021. This group of individuals have all been active members of our Fragile X community for many years and contribute in all areas of outreach.
We designed several Fragile X awareness yard signs so you can choose one that serves you best. Each are printed on-demand and shipped directly to you with everything you need to display them in your yard for all of July or even longer if you choose.
Dr. Nicole Tartaglia joins us to discuss Fragile X syndrome (FXS). She covers everything from brief descriptions of the Fragile X-associated disorders, such as FXTAS and FXPOI, to details about FXS.
Many thanks to Brenda Finucane, MS, CGC, for her webinar to help each of us understand the genetics of Fragile X. The presentation was held live online Wednesday, April 28, 2021. TYou can access an on-demand stream of it here.