The NFXF Blog
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 [...]
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 [...]
Get to Know Your Local Firefighters
Getting to know your local firefighters can help you and your children with Fragile X syndrome in so many more ways than you think. Read about how to engage with them and how it will help your family.
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.
Preparing for Your Child’s Individualized Education Program (IEP)
Going to an IEP meeting was always an emotional experience for me. After a couple of years of meetings with a group of people—teachers, psychologists, administrators—who had obviously already made many decisions regarding my son ... I decided to make some changes.