The NFXF Blog
An Update on Our Advocacy Efforts
An update on our advocacy efforts, including Advocacy Day 2022 and key legislation we are currently supporting.
An Xtraordinary Employee: Clay
A concern for parents of children with Fragile X syndrome is their level independence as an adult. This is Clay and his mother June's story.
Understanding a Fragile X Intermediate Result
Adult neurologists and reproductive specialists increasingly recommend Fragile X testing, as awareness has grown about FXTAS and FXPOI. Fragile X carrier testing during pregnancy has also become relatively commonplace in the US and elsewhere, even for women without a family history suspicious for Fragile X disorders.
Discovering Your Young Adultʼs Strengths for a More Satisfying Career Path
First jobs are hard, and as a young adult with Fragile X syndrome it may be nearly impossible without a little help from parents and others in their lives to help them recognize their own strengths.
8 Employee Attributes to Teach Your Young Adult
Getting a new job is exciting, but young adults with Fragile X syndrome need to also understand what's expected of them at a workplace. Help them prepare by first understanding these eight guidelines.
Raising Knowledge and Awareness of Fragile X Syndrome in Serbia, Georgia, and Colombia: A Model for Other Developing Countries?
Raising knowledge and awareness of Fragile X syndrome to medical professionals leads to direct benefits for families and individuals.
Parent Clinical Trial Priorities for Fragile X Syndrome: A Best-Worst Scaling
The aim of this study was to determine parents’ main priorities for clinical trials, at a time when the clinical trial opportunities are on the rise.
Congratulations to the 2021 NFXF Summer Scholar Recipients
We asked this year’s four NFXF Summer Scholars — Collis Brown, John Burwinkle, Bonnie McKinnon, and Elizabeth Saoud — to summarize their summer project in a 15-minute video presentation, and here they are!
NFXF Webinar: 2021 Industry Updates
We held an NFXF Webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.
Study: Memory Game in Children with FXS
A study to learn about memory and memory development in children with Fragile X syndrome.
An Xtraordinary Employee: Zachary
Meet an xtraordinary employee, Zach, who turned his love of animals into his perfect job at the Monterey Zoo.
Talking with Your Daughter About Her Fragile X Syndrome Diagnosis
Are you wondering when and how to talk to your daughter about her Fragile X syndrome diagnosis? If so, you are not alone. Here are some strategies to help in talking about your daughter’s FXS diagnosis with her.