Being the caretaker of someone with special needs, such as Fragile X syndrome, can be daunting. Isabel looks back at her journey, sharing advice and encouragement for new caregivers or those who have been doing it for years.
Sophia James, a top 10 finalist in the latest season of American Idol, talks about being a sibling of her brother James, who has Fragile X syndrome. You can view the video or read the transcript below. There is so much in what she says — take the time to watch/read it. It’s well worth your time.
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.
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.
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.
“These top-line data show promise for Zygel in some individuals with Fragile X syndrome. We look forward to seeing the next steps taken by Zynerba, and continue to be thankful for their thoughtful partnership and dedication to bettering the lives of those living Fragile X.” —Linda Sorensen, NFXF Executive Director
RTI International and the University of North Carolina at Chapel Hill are conducting an early intervention study to learn about the best ways to support early development in infants identified with the full mutation of Fragile X. Babies 0–9 months old with the full mutation, and their caregivers, may be eligible to participate.