Should I Use Cogmed Intervention for Memory and Attention in Fragile X Syndrome?
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 Computer-based 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.
Were New Fragile X Genes Discovered?
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."
How You Can Stand Up to Fragile X
When people ask me, What do you do? I tell them I help people living with a rare genetic disorder live their best lives — every day. After a pause, their response is often something along the lines of, Wow… that sounds really meaningful! I nod my head [...]
Partnering with the MIND Institute
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, [...]
Nebraska Launches the ENABLE National Program
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.
Tennessee Launches ABLE TN Program
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.
Is Fragile X Research Headed for a Resurgence?
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 [...]
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 [...]
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 [...]
Forward, Together
It is my honor and privilege to join the Fragile X community as the new CEO of the National Fragile X Foundation. Since my arrival, I have had the opportunity to witness, first-hand, what I [...]
Roche Discontinues Drug Study, Reports Negative Phase II Clinical Results
We join with all of you in expressing our disappointment at learning the news of the negative phase II clinical study results from Roche. The drug under study was a metabotropic glutamate receptor subtype 5 [...]
Coping Skills and Fragile X Syndrome: A Response from Dr. Cheryl Klaiman
"Adaptive skills as measured in the study worsen relative to typical peers,” said Dr. Berry-Kravis. “They do not actually get worse in that the children with Fragile X syndrome are not regressing or losing skills.” [...]
The NFXF Responds to Harrisburg Loss
The National Fragile X Foundation is saddened to learn of the death of Jarrod Tutko Jr., an 8-year-old boy from Harrisburg, Penn., who was living with Fragile X syndrome. The Fragile X community mourns the [...]