The NFXF Blog
Talking with Your “Typical” Children About a Sibling’s Fragile X Syndrome Diagnosis
When parents first learn about Fragile X, their primary focus is on the meaning of the diagnosis for their child with the syndrome. Once the dust settles though, they begin to think about the genetic implications for other family members, and in particular, for typically developing siblings who may or may not carry a Fragile X mutation.
Getting and Keeping a Job
It was late summer and Ian was 18 years old and he was getting ready to start the transition program at his high school, a program for students 18-21 years old after they graduate from high school. I had to figure out how to make this work.
Preschool Word Learning Study
UC Davis MIND Institute If you have a son with Fragile X syndrome between 36 and 66 months of age, you and your child are invited to participate in a research study being conducted [...]
Omnibus Spending Bill Increases Funds for NIH
Today, Congressional leaders released the text of the omnibus spending bill that will be debated and hopefully passed before Congress adjourns for the year. The omnibus bill funds all 12 appropriations bills, including THE one [...]
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 [...]