The NFXF's Clinical Trials Committee provides family-friendly recommendations on the use of Cogmed intervention for memory and attention in Fragile X syndrome.
A research team from the UC Davis MIND Institute recently published findings from a study using a computer program called Cogmed to train memory, flexible thinking, and attention in children and adolescents with Fragile X Syndrome. Referred to as ‘executive function’ - memory, flexible thinking, controlling impulses, and attention are problems characteristic of individuals with Fragile X Syndrome. The computer program was employed with 100 children and adolescents with Fragile X Syndrome – presenting them with challenging visual and auditory tasks involving memory and attention and challenging them to think flexibly in order to complete those tasks.
A conversation with David L. Nelson, Ph.D., a Professor at Baylor College of Medicine and a member of the NFXF Scientific Advisory Council. He is a co-discoverer of the FMR1 gene and the repeat expansion mutation that causes fragile X syndrome. He is answering questions about a recent study published in the journal Molecular Psychiatry and an accompanying press release about the paper from Northwestern University’s Feinberg School of Medicine. The headline of the press release claims, "New Fragile X Genes Discovered."
Last Sunday morning I had the pleasure of joining several members of our board of directors as well as local New York City families as we came together for a conversation about the hopes, dreams, [...]
The Board of the NFXF is very pleased to announce that it has named Linda Sorensen, our current Chief Operating Officer, as Acting Executive Director, effective immediately. Linda, who has been with the Foundation for [...]
We are pleased to announce the addition of Dan Whiting to the NFXF team as Director of Communications and Government Relations. With over 19 years of experience in public policy, communications and marketing, including 11 years [...]
The National Fragile X Foundation is pleased to announce that the state of Nebraska has now launched its version of an Achieving A Better Life Experience (ABLE) account. Known as the “ENABLE” national program, it offers enrollment to qualified individuals with disabilities both in Nebraska and throughout the country.
The National Fragile X Foundation is excited to announce the State of Tennessee’s launch of the country’s second Achieving a Better Life Experience (ABLE) program. ABLE TN is a national program, offering enrollment to qualified individuals with disabilities both in Tennessee and throughout the country.
The last two years have been tough for Fragile X (FX) research. Many of us in the greater Fragile X community believed that drugs capable of reversing the core symptoms of FX were sitting on [...]
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 [...]
https://vimeo.com/42276975 We’re excited to know that Mission to Lars is finally coming to the United States on September 25, 2015! The documentary starring Tom Spicer, a young man living with Fragile X syndrome, was [...]
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 [...]
Over the weekend, NBC’s Dateline aired an hour-long special called "On The Brink" that featured children with special needs and the issue of aging out of school-based services. In it, reporters followed several families with the [...]
On December 19, 2014 the ABLE Act was signed into law by President Obama. ABLE was truly bipartisan, and had overwhelming support from both sides of the aisle in the House and Senate. Now that [...]