The NFXF Blog
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.
Ben Moelis Wins Award for Creating Game to Help Children with Fragile X
Congratulations to Ben Moelis for winning an award for his game, which he developed to help Justin Silver – a family friend living with Fragile X syndrome – structure his days. Ben Moelis [...]
CDC Awards $1.75 Million Grant to Expand Nationwide Registry for Fragile X Syndrome
A $1.75 million grant to continue research on Fragile X syndrome was given to the Institute for Basic Research (IBR), Willowbrook, by the Centers for Disease Control. Fragile X syndrome is the most common known cause [...]
Adapting Autism Interventions for Fragile X Syndrome
Fragile X experts Sarah K. Scharfenaker and Tracy Stackhouse discuss how to adapt autism interventions for those with Fragile X syndrome.
OT, SLP, AT & IEP … Making Sense of Special Education Alphabet Soup
An at-a-glance resource, combining our professional expertise plus insights and perspectives of families from the NFXF community based on their personal, first-hand experiences with the IEP process.
Let's Talk Fragile X Premutation Carriers and Health
Fragile X premutation carriers have long expressed concern over issues they might be facing because of having the premutation. Only in recent years has research been making headway into the reality of premutation carrier issues.
Teaching Your Child to Ask for Something
One of the most challenging things for my son, Ian, to do is ask another person (not mom or dad) for something — like a favor or request — in an appropriate way. This [...]