The bipartisan “Gabriella Miller Kids First Research Act”—a bill authored by U.S. Rep. Gregg Harper with co-authors U.S. Reps. Peter Welch and Tom Cole—is heading to the president’s desk. The bill funds pediatric medical research [...]
Congratulations to the UC Davis MIND Institute—a member of the Fragile X Clinical & Research Consortium— for being named an Intellectual and Developmental Disabilities Research Center. Only a handful of neurodevelopmental centers hold that distinction, and we’re proud to call them our friends and colleagues in the Fragile X community.
On February 12, 2014, President Barack Obama signed an executive order raising the minimum wage for employees of federal contractors, including workers with disabilities, to $10.10/hour beginning in 2015. The signing marks a historic day [...]
MIND Institute University of California, Davis If you have a son with Fragile X syndrome or a son with autism between 15 and 22 years of age, you and your son are invited to [...]
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.
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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.
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.
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.
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. [...]
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....
