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 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.
Externally-Led Patient-Focused Drug Development Meeting for Fragile X Syndrome
NFXF has secured an externally-led Patient-Focused Drug Development (PFDD) meeting, conducted through the FDA, for Fragile X syndrome. The meeting is scheduled for March 3, 2021.
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.
Zynerba Announces Results from CBD Gel Clinical Trial
"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
Tell Us About Someone Xtraordinary In Your Life
Tell us about someone Xtraordinary in your life related to Fragile X. Submit your nominee and and we'll let them know plus we'll use it to help spread awareness about Fragile X.
PIXI Study: Parent-Infant Fragile X Intervention
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.
NFXF 2020 Virtual Graduation Ceremony
To honor all Fragile X self-advocates and siblings who are being promoted/graduating in 2020, we held a virtual graduation ceremony. Gregg Harper, former Member of Congress from Mississippi and a Fragile X dad, gave a commencement address.
Join the NFXF 2020 Virtual Graduation Celebration
Join the NFXF as we celebrate your graduation virtually, with special guest speaker Mr. Gregg Harper. Deadline: June 4, 2020.
American Idol’s Sophia James Introduces Her Brother James — Who Has FXS — to 8 Million Viewers
American Idol contestant Sophia James (formerly Wackerman) introduces her brother James, who has Fragile X syndrome, to more than 8 million viewers. Sophia took to social media to help spread awareness and advocate for Fragile X.
Study: Our Fragile X World Registry
Our Fragile X World collects data from families using online surveys and in-person studies. Topics covered include sensory or behavioral challenges, health care experiences, and the impact of Fragile X on families.
17th NFXF Fragile X Conference Cancelled Due to COVID-19
This post was written when the conference was cancelled due to COVID-19 concerns ... but now the conference is back on, and is virtual!
Get Moving with Special Olympics’ Fit 5
The Special Olympics is a valuable program for so many families, and the Fit 5 program can help with you and your child's daily living strategies and routines.
Fragile X Premutation Carrier Study at USC
The University of South Carolina is conducting a research study focusing on the range of language, social, and cognitive features that may be associated with variations on the FMR1 gene. Women age 35-75 who are carriers of the Fragile X premutation may be eligible to participate.
Study to Learn About the Cognitive Profile of Children with a Full Mutation of Fragile X
An Alliant International University clinical psychology doctoral candidate is conducting a research study to learn about the cognitive profile of children with a full mutation of Fragile X. Males and transgender females between the age of 8 and 12 may be eligible to participate.
