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.
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 [...]
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 [...]
Katie Couric and Yahoo News Partner with the NFXF for Fragile X Awareness Month
In a report earlier this year, Yahoo News and Katie Couric shared insight on Fragile X and its link to autism and other well-known conditions. In that report, she asked an important question: “If the [...]
What’s Going on in Fragile X Public Policy?
Updates on Appropriations The House Appropriations Committee will mark up the '16 Labor-HHS-E spending bill that was passed by the subcommittee last week. The bill includes $153 billion in discretionary funding, which is a $3.7 [...]
GA: Let 'Em Know Family Walk
Greater Atlanta FX LEK 5K Family Walk Date: July 11, 2015 Time: 09:00 AM Location: East Cobb Park3322 Roswell Rd Marietta, GA 30068 Hosts: Greater Atlanta Fragile X Details Come join your Greater [...]
2015 Summer Student Fellowship Research Fund Recipients
This summer, the NFXF will fund four summer student research fellowships at $2,500 each through the Summer Fellowship Research Fund. Since its inception in 2000, the fund has awarded $225,000 to 90 students all focused on advancing [...]
Behavior and Fragile X Syndrome
When discussing FXS and behavior, the focus should be on the whole person. Some behaviors may be a result of the condition, of which many are positive.