The NFXF Blog
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.
GA: Month Long Holiday Fundraiser
Greater Atlanta Fragile X Vendor Holiday Fundraiser Date: November 30, 2014 Time: Location: Atlanta, GA 30327 Hosts: Greater Atlanta Fragile X Details Three great companies, one great cause - Fragile X!! With the [...]
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 [...]
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, [...]