The NFXF Blog
COVID-19 Check-In: Month 5
What can we do to take care of ourselves and to help others? A mother takes a step back to imagine what life during a pandemic looks like through the eyes of her son, who has Fragile X syndrome.
The Marner Family Hosts a Golf Outing in Support of NFXF
The Marners held a golf outing in western Illinois to raise support for the NFXF. “We love being able to help in any way we can and this is something Reid also had so much fun with!”
Sophia James: Life as a Sibling of Someone with Fragile X Syndrome
Sophia James, a top 10 finalist in the latest season of American Idol, talks about being a sibling to her brother James, who has Fragile X syndrome. There is so much in what she says — take the time to watch and read it. It’s well worth your time.
Shining a Light on NFXF’s Global Impact
In 2019, Dr. Tabatadze and her colleagues ─ a small team of doctors ─ established the first local Fragile X laboratory in Georgia. They conducted a pilot study and tested 250 patients with autism spectrum disorder (ASD) and intellectual disabilities; the study yielded 11 positive results for Fragile X.
Getting Comfortable Wearing a Mask
Real-life tips from a mom, Jayne Dixon Weber, who’s already going through this with her own son, plus a a quick video from Rebecca Shaffer to guide you through the process of getting your child comfortable wearing a mask.
Language Across the Lifespan in Fragile X Syndrome: Characteristics and Considerations for Assessment
RESEARCH RESULTS ROUNDUP — Describe cognition and language in FXS using the data from a large group, while trying to understand if the standard assessments are feasible (able to be done accurately) and valid (reflect reality) in FXS and then compared the assessment results to caregiver report.
Delineating Repetitive Behavior Profiles Across the Lifespan in Fragile X Syndrome
RESEARCH RESULTS ROUNDUP — What restricted and repetitive behaviors looked like in 154 individuals with FXS, 2–50 years old, based on age, ASD diagnosis, and IQ score.
Pharmacologic Interventions for Irritability, Aggression, Agitation, and Self-Injurious Behavior in Fragile X Syndrome: An Initial Cross-Sectional Analysis
RESEARCH RESULTS ROUNDUP — The psychopharmacologic management of irritability, agitation, aggression, and self-injurious behaviors and drug therapy treatment.
Toilet Training in Fragile X Syndrome
RESEARCH RESULTS ROUNDUP — FORWARD data on 633 individuals with FXS filled the gap for much needed information on when children with FXS learn bladder and bowel toileting skills.
Preventive Care Services and Health Behaviors in Children with Fragile X Syndrome
RESEARCH RESULTS ROUNDUP — This research can help identify preventive care services that patients with FXS may need and focus on reaching recommended preventative care objectives.
Study: Join the FORWARD Registry & Database
The FORWARD Registry is open to individuals with any type of Fragile X disorder, and the FORWARD Database is open to individuals with a full mutation (including mocaicism).
2020 Fragile X Awareness Packets
July is National Fragile X Awareness Month. To help you raise awareness we pulled together some materials that are free to download and use: posters, Zoom backgrounds, coloring sheets, flyer, and “Know Me” cards.