2013 Annual Report
Message From Jeffrey | Why Your Support Matters | Support | Awareness | Advocacy | By The Numbers | Financials It was an honor and a privilege to serve as the Interim Executive Director for [...]
How Common are Medical Problems in Fragile X Syndrome?
Are medical problems more common in individuals with Fragile X syndrome than in typically developing children? To help answer that question and guide pediatricians in caring for individuals with FXS, clinicians from the FXCRC set out to determine the most common medical problems found in individuals with FXS.
Fragile X Syndrome: NIH Research Study
NIMH This research seeks to understand how protein formation in the brain is affected in Fragile X syndrome (FXS). Researchers will measure the rate at which the brain makes proteins (protein synthesis) and will [...]
Randi Hagerman Receives C. Anderson Aldrich Award from American Academy of Pediatrics
Co-Founder of the NFXF honored with one of the most prestigious awards for pediatricians in the United States Randi Jenssen Hagerman, co-founder of the National Fragile X Foundation (NFXF) and medical director of the [...]
How have we helped you?
How has the NFXF helped you and your family over the years? As we close out our 30th year of service to families, we'd like to share pictures and statements of how we've helped you [...]
Comparison of Financial & Employment Impacts of FXS, Autism & ID
A study summary of: A Comparison of Family Financial and Employment Impacts of Fragile X Syndrome, Autism Spectrum Disorders, and Intellectual Disability The full study is available in Research and Developmental Disabilities, July 2014. The [...]
GA: Family Bowling & Social
Fragile X Fun Day, A Family Celebration Date: November 2, 2014 Time: 02:00 PM Location: The Brunswick Zone2749 Delk Road Southeast Marietta, GA 30067 Directions: Take I-75 to Delk Rd. (exit 261) Turn right if [...]
Alcobra Clinical Trials in 12 Cities
Alcobra, Ltd. Alcobra is pleased to let you know about a new clinical trial that is currently underway and recruiting patients with Fragile X syndrome. The study is seeking male and female participants between [...]
The Long Winding Road to Eureka
Reposted from NFXF Quarterly, President’s Note, Issue #44, March 2012 How did I wind up here? Eight short years ago I had never heard of Fragile X, let alone CGG repeats, carriers, and mGluR theory. [...]
Seattle Children's Hospital Metadoxine trials
Seattle Children's Hospital Does someone you love have Fragile X syndrome (FXS)? If so, please know that we are currently enrolling individuals with FXS between 15 and 55 years of age to participate in a [...]
Clinical Trial sponsored by Neuren Pharmaceuticals enrolling participants with Fragile X syndrome
Neuren Pharmaceuticals Neuren Pharmaceuticals is pleased to inform you of an opportunity to participate in a clinical trial for adolescents and adults with Fragile X syndrome. This clinical trial is testing an investigational medication, NNZ-2566, [...]
NIH awards $35 Million for Fragile X Research
Three research teams receive funding over next five years The National Institutes of Health (NIH) is making funding awards of $35 million over the next five years to support the Centers for Collaborative Research in [...]
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.” [...]