The NFXF Blog
Introducing… The Community Support Network
One of the most meaningful experiences for a Fragile X family is to meet another family and know you are not alone in this journey. At the National Fragile X Foundation, our mission is to serve you by connecting and supporting individuals and families through our family support network.
Scientists Uncover Trigger for Most Common Form of Intellectual Disability and Autism
It’s a breakthrough in understanding the process, but it is not yet a breakthrough for treating the condition. A new study led by Weill Cornell Medical College scientists shows that the most common genetic form [...]
Assessment of Parental Coping Strategies and Positive Growth
University of Newcastle Genetic disorders in children: An assessment of parental coping strategies and positive growth Following on from our earlier study of how parents disclose a diagnosis of Fragile X syndrome to their [...]
Quick Survey: Treatments for Problem Behaviors in FXS
Please help the NFXF and the Fragile X clinics gather the information necessary to support clinical trials in Fragile X syndrome (FXS) across the country. These studies are designed to find out if medicines commonly [...]
MA: Inaugural Business Meeting
Inaugural Business Meeting Date: March 16, 2014 Time: 02:00 AM - Location: Cambridge, MA Hosts: Cost:
Exciting New Awards Granted!
Justin Silver The National Fragile X Foundation is pleased to announce the 2013 recipients of The Justin Silver Award for Innovative Services. Established by the Silver Family in honor of their son Justin, these [...]
Advocate Your Butt Off!
Get up and join me because we're going to advocate our butts off! Maybe advocating is not actually a proven workout technique, but it will result in improvements. is not just about Fragile [...]
Let's Talk Behavior and FXS
Dr. Marcia Braden, licensed psychologist and noted Fragile X expert, leads our latest "Let's Talk" Webinar on Behavior. She begins with a presentation on "How Neurobiology Affects FXS Behavior", followed by a Q&A session from members who were part of the webinar.
"Without question, it works." A message from the Chair of Public Policy
Some may call me a Washington Insider. I work inside the Beltway as a lobbyist who meets with Members of Congress every day trying to make a case for action. My office is right next to the Capitol. You could also call me a Fragile X Insider.
MIND Institute Study on Men with FX Premutation
We are searching for men who are carriers of the Fragile X premutation between the ages of 40 and 69 to participate in a longitudinal UC Davis research project, studying changes in brain and cognition associated with aging. For men who have not yet been tested, FMR1 DNA testing is completed to help determine eligibility for the study.
Brandeis University Looking for Girls with FXS Aged 13+
Lindsey Stobie, Masters candidate in the Genetic Counseling Program at Brandeis University Do you have a daughter with Fragile X syndrome? I am a graduate student in the Genetic Counseling Program at Brandeis University. [...]
Grateful Thoughts
As this year rushes to a close, I want to take a moment to tell you how grateful I am to be a part of the Fragile X community. I’ve learned so much from each of you – your determination, your commitment and your passion to make the lives of your families the best they can be is my daily inspiration....