The NFXF Blog
Parent-Implemented Spoken Language Intervention
We are recruiting a small group of mothers and their children with Fragile X syndrome, between the ages of 10- and 17-years, to participate in a pilot study of a parent-implemented language intervention. The goal of this project is to teach each mother strategies which can be used to support spoken language development in their child with Fragile X syndrome.
New Test Makes Parkinson's-like Disorder of Middle Age (FXTAS) Detectable in Young Adulthood
The very earliest signs of a debilitating neurodegenerative disorder, in which physical symptoms are not apparent until the fifth decade of life, are detectable in individuals as young as 30 years old using a new, [...]
You Can Help by Donating an Item to Our Conference Auction!
The 14th is full of fun activities, including a Saturday night auction where you can bid on one-of-a-kind items. You can make the auction even better by donating a special item to our [...]
National Fragile X Advocacy Day: Speaking for Herself
2014 marked the 11th National Fragile X Foundation Advocacy Day (NFXFAD) in Washington, DC. Over the past 11 years, our annual advocacy efforts have resulted in nearly $300 million in funding for Fragile X research and clinical support. On March 4th and 5th, nearly 170 advocates participated in more than 160 meetings on Capitol Hill. Your donations played a vital role in funding the NFXFAD program and ultimately made our time in DC a success.
Examining Factors that Lead to Positive Family Adaptation to Fragile X Syndrome
Family adaptation is the process by which parents and other family members adjust, accommodate, or transform their roles and responsibilities to better meet current demands. All families must change and adapt over time, but this [...]
Thank You Again to All of Our 2013 Fundraising Event Partners!
It’s always fun to look back and see the impressive list of events that so many enthusiastic, creative and energetic fundraisers put on each year. And 2013 was amazing! You can just feel the FUN that was had by all!
Understanding the Fragile X Learning Style for Better Results
We often remind fellow interventionists and educators time and time again about the many unique aspects of Fragile X syndrome as well as the resources available online and in print.
Greater Chicago Newsletter: Spring 2014
Research Update Meeting March 22, 2014 1-4 P.M. Dr. Elizabeth Berry-Kravis will speak about current and upcoming research opportunities! The event is being hosted by Avis Primack Location 51 Old Oak Drive Buffalo Grove, IL [...]
Senate Sends Pediatric Research Bill to President’s Desk
The bipartisan “Gabriella Miller Kids First Research Act”—a bill authored by U.S. Rep. Gregg Harper with co-authors U.S. Reps. Peter Welch and Tom Cole—is heading to the president’s desk. The bill funds pediatric medical research [...]
UC Davis MIND Institute Joins Ranks of Elite US Neurodevelopmental Centers
Congratulations to the UC Davis MIND Institute—a member of the Fragile X Clinical & Research Consortium— for being named an Intellectual and Developmental Disabilities Research Center. Only a handful of neurodevelopmental centers hold that distinction, and we’re proud to call them our friends and colleagues in the Fragile X community.
Raised Minimum Wage for Federal Employees Includes Employees with Disabilities
On February 12, 2014, President Barack Obama signed an executive order raising the minimum wage for employees of federal contractors, including workers with disabilities, to $10.10/hour beginning in 2015. The signing marks a historic day [...]
Study on Language Development in Fragile X Syndrome
MIND Institute University of California, Davis If you have a son with Fragile X syndrome or a son with autism between 15 and 22 years of age, you and your son are invited to [...]