This study shines a light on the need for better long-term support and care planning for individuals with Fragile X syndrome.
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.
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.
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 to medical professionals leads to direct benefits for families and individuals.
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.
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!
Meet an xtraordinary employee, Zach, who turned his love of animals into his perfect job at the Monterey Zoo.
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.
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.
Helpful tips and insight into various housing options, sources of funding, and points to consider before your young adult's big move.
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.
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).
Dr. Anne Wheeler provides an overview of stress vulnerability in women with (and without) a premutation, and how mindfulness-based techniques can be helpful for increasing mindfulness, reducing stress, and improving overall well-being.
As a geneticist and academic, Warren’s contributions to the understanding of Fragile X and to the broader Fragile X community are immense. In addition to being a gifted scientist, he was an outstanding leader, mentor, and friend who will be greatly missed.
