The International Fragile X Premutation Registry Advisory Committee just published their first publication, “The International Fragile X Premutation Registry: building a resource for research and clinical trial readiness”.
Meet David and Jason who together bake and sell dog treats. But that's not their only job: David works as a stocker at a grocery store and paints and exhibits his work at a local gallery. Jason works as a dishwasher and cart attendant and loves to swim.
Highlighting Xtraordinary Individuals Do you know someone who is XTRAORDINARY? Please send us your submission so that we can feature your Xtraordinary individuals during Awareness Month this July! Learn about Katie Hencak, medical student [...]
On May 5, 2022, The Wall Street Journal Weekend Edition showcased an article called “The Surprising Legacy of a Genetic Disorder” by Dr. Anne Skomorowsky. The essay summarizes the history of Fragile X and [...]
Thanks to The European Fragile X Network, FMR1 now stands for fragile X messenger ribonucleoprotein 1, removing the reference to “mental retardation” which has long been outdated in common vernacular.
Corey Gershenson lives with Fragile X syndrome. Thanks to his determination — and employers willing to embrace employees with disabilities — he also works two jobs and volunteers at Mercy Hospital in St. Louis.
Being able to identify and diagnose possible nervous system disorders by detecting gait problems 15 to 20 years before their clinical diagnosis could help advance treatment development and quality of life.
This system could potentially predict FXTAS onset in premutation carriers who are not showing signs of FXTAS on a neurological exam.
The Bridges have been supporting the Fragile X community for years. They took a few minutes this month to tell you why and encourage you to join them in supporting the work of the National Fragile X Foundation this month. Hear what they have to say.
While there is promise for future treatments, utilizing this iPSC brain organoid model for future treatment development could prove to be successful.
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.
