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 [...]
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 & [...]
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 [...]
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 [...]
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 [...]
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 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.
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 [...]
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 [...]
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.
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
