The NFXF Blog
Is Fragile X Research Headed for a Resurgence?
The last two years have been tough for Fragile X (FX) research. Many of us in the greater Fragile X community believed that drugs capable of reversing the core symptoms of FX were sitting on [...]
Neuren’s Trofinetide Successful in Phase 2 Clinical Trial in Fragile X Syndrome
I was honored to have been invited to represent the Fragile X community and the NFXF at the recent meeting sponsored by Neuren Pharmaceuticals, in which they shared some very encouraging news regarding their Phase [...]
Let's Talk FXS, Autism & Behavior with Tracy & Mouse
Our favorite duo, Mouse & Tracy of Developmental FX, join us to discuss Fragile X, autism and behavior. As always, they provided insight and wonderful advice to our audience - and their presence is always a delight!
Married … With (Fragile X) Children — Webinar
When children with FXS enter the relationship, married couples must adapt to their new roles while trying to stay connected as lovers and partners. Diane Smith gives us some pointers.
Study: Racial and Ethnic Minority Fragile X Survey
Georgianna Baker-Gay of Capella University Dear Families, You are invited to take part in a Fragile X syndrome (FXS) study for racial and ethnic minority children and families by taking an online survey. The [...]
AZ: Moms' Night Out
Moms' Night Out at Cornish Pasty Co. Date: November 13, 2015 Time: 7:00 PM - 9:00 PM Location: Cornish Pasty Co.1941 W. Guadalupe Rd. Mesa, AZ 85202 Mesa, AZ 85202 SE Corner of Dobson & [...]
Diagnosis of Fragile X Syndrome: A Pre- and Post-Diagnosis Comparison of Carrier Mothers' Emotional and Support Experiences
University of Maryland student Amanda Catchings Purpose of Study To better understand the emotional experiences and experiences with support systems of mothers who are carriers of Fragile X syndrome and have had a child [...]
When Can We Begin Opening ABLE Accounts?
After eight long years urging passage by the US House and Senate, the ABLE Act was signed into law by President Obama in December of 2014. But ten months later, no one has been able [...]
2015 Community Support Network Awards
The Awards began in 2014 as a way to recognize the incredible work and dedication of our CSN groups and leaders. There are four categories: Most Innovative Event Up & Comers of the [...]
Summary Reports from 2015 Summer Student Fellowship Research Fund Studies
This summer, the NFXF funded four summer student research fellowships at $2500 each through the Summer Student Fellowship Research Fund. Since its inception in 2000, the fund has awarded $225,000 to 90 students focused on [...]
Learning to Ride a Public Bus Independently
Learning to ride a public bus independently is a skill that many children with Fragile X syndrome (FXS) will be able to learn. Take it slow, focus on safety and routine, and guide them to independence.
Letʼs Talk Fragile X Syndrome, Autism & Behavior — Webinar Replay
Developmental FX joins us to provide insight and advice on Fragile X and its connection to autism and behavior.