The NFXF Blog
Study: Language Study for Children and Adolescents with Fragile X syndrome
Researchers at the University of Wisconsin-Madison and the University of Massachusetts-Amherst are conducting a study to learn about links between learning and language in Fragile X syndrome.
American Academy of Pediatrics Hosts New Course on Fragile X syndrome
AAP/CDC course, "Identification, Management, and Caring for Children and Adolescents with Fragile X Syndrome" will be available for pediatricians and other healthcare professionals through August 1, 2025, on the AAP PediaLink platform.
Survey: Fragile X Nutrition Survey
The University of Wisconsin-Madison is conducting a survey to learn about associations between infant feeding and neurodevelopment in children with Fragile X syndrome.
Back to School Resources for Parents (and Teachers) of Fragile X Students
For the upcoming school year, we compiled our most popular school and education resources for parents and teachers.
Announcing Our 2022 NFXF Awardees
Our 2022 NFXF awards are in! Learn more about each award and about each of our awardees.
Diagnosis and Treatment of Fragile X-Associated Tremor Ataxia Syndrome — Webinar
This webinar provides a clinical overview of the diagnosis and treatment of FXTAS, including a summary of its clinical features, treatment options, and information about in-vitro fertilization.
Lifetime Channel Airs “Behind the Mystery of Fragile X Syndrome”
Watch this segment from Lifetime’s daily morning show, The Balancing Act, “Behind the Mystery of Fragile X Syndrome: A Genetic Disorder That Can Cause Learning and Behavior Challenges.”
Neuropsychological Changes in FMR1 Premutation Carriers and Onset of FXTAS
This is the first time that Fragile X premutation carriers have been tracked in a longitudinal study. This study provides evidence for early markers of FXTAS that may be helpful in eventually identifying the best candidates for early, preventive intervention.
Common Behaviors and Available Treatments Across the Lifespan — Webinar
Presented by Rebecca Shaffer, learn about the signs of emotion dysregulation in Fragile X syndrome and ways to respond, and practical strategies.
Emotion Dysregulation in Fragile X Syndrome — Webinar
Presented by Rebecca Shaffer, learn about the signs of emotion dysregulation in Fragile X syndrome and ways to respond, and practical strategies.
The Marner Family Hosts 3rd Annual Golf Outing in Support of NFXF
The 3rd Annual Quad Cities Fragile X Golf Outing on June 25, 2022, at the Byron Hills Golf Course in Byron Hills, Illinois, was a huge success — in spite of the threat of a downpour!
The NFXF Heartland Chapter Hosts Successful Summertime Fundraiser “Bike To X Out Fragile X”
The always popular Bike To X Out Fragile X fundraising event draws almost 70 riders for a unique bike ride through Des Moines and Waukee, Iowa. Learn more about their day.