The NFXF Blog
Life After High School: Transitions and the Importance of a Daily Schedule
Routine activities such as working at a paying job, volunteering, or participating in a day program are all good options. Here we provide some tips to figure out what type of activities are best for your child.
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.
5 Steps for Teaching Your Young Adult to Walk to Work
While walking isnʼt always be feasible, we have tips for teaching your young adult to walk to work, which you can adapt for other destinations.
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.
Focus Group: Parental Satisfaction with Fragile X Resources
A USC master’s program research study to learn about parents’ satisfaction with resources received when child is diagnosed with FXS.
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).