The NFXF Blog
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.
Employment Opportunities for Your Young Adult
Helping your young adult transition out of school and into a new job can be overwhelming, we have some tips and resources to make it a little easier for both of you.
Tips for Beginning the Moving Out Process with Your Young Adult
Helpful tips and insight into various housing options, sources of funding, and points to consider before your young adult's big move.
Let the Awareness Continue!
It looks like in many places we're back to wearing masks, or will be soon. Our family has pulled out all our favorite masks and getting used to them all over again.
CDC Awards $4 Million Cooperative Agreement to Build on the Work of the FORWARD FXS Natural History Study!
A $4 million cooperative agreement to “Characterize the Natural History of Fragile X Syndrome to Inform the Development of Intervention and Outcome Measures” was awarded to Dr. Elizabeth Berry-Kravis of Rush University Medical Center by the Centers for Disease Control and Prevention (CDC).
POcKIT Study: At-Home Study for Young Children with FXS
Purdue University is conducting a research study to learn about how genetic, biological, nutritional, and environmental information relates to health and development in Fragile X syndrome.