This survey will help support families in the Early Check study in NC whose newborns have been diagnosed with Fragile X and inform the design of an early intervention program for these babies.
Matt Faruolo wanted to do something to raise awareness about Fragile X, so he decided to host a weeklong fundraising event at work. Here’s how he did it.
RTI Int’l and UNC at Chapel Hill are conducting a research study to learn more about early development of young children with Fragile X in North Carolina, and the experiences of their parents when obtaining the diagnosis and early intervention services.
Diane and her son Joshua volunteered for a clinical trial a little over a year ago. In this heartwarming video, his mom shares how their family made the decision to participate, and what the experience has been like so far.
For the 2019 school year, we compiled our most popular school and education resources for parents and teachers.
We have preliminary evidence that metformin, a common type 2 diabetes medication, is beneficial for language, cognition, and behavior in both children and adults with Fragile X Syndrome.
A survey to measure levels of behavior. When someone with FXS is experiencing anxiety, describe what you see and hear, and how the experience impacts your/their quality of life.
Fragile X Awareness Day is July 22, 2019, and this year we want to hear from you. You're invited to share your story about someone special in your life who is living with Fragile X.
Two recently published, peer-reviewed Fragile X research papers are now available on our website: Voice of People with Fragile X Syndrome and Their Families: Reports from a Survey on Treatment Priorities, and Best Practices in Fragile X Syndrome Treatment Development.
We took a peek behind our blog posts to see which were the most popular. These are the top 5 most popular posts as of April 2019.
Studies involving the impact of an ASD co-diagnosis in FXS have to date relied mostly on parent-reported data and/or smaller sample populations. But thanks to the registry and longitudinal database FORWARD—the Fragile X Online Registry With Accessible Research Database—plus standardized clinician- and parent-reported data from 25 Fragile X clinics, we now have access to samples large enough to include a breakdown of findings by age groups.
The NFXF Western Massachusetts Chapter’s eighth annual Cork and Café Fundraiser hosted 55 wine lovers for an evening of wine tasting, appetizers, a silent auction, and for the non-wine drinkers, hand-roasted coffees.
The Fragile X Resource Center of Missouri hosted 100-plus attendees for a two-day Learning Series workshop November 2–3, 2018, led by fragile X experts Mouse and Tracy.
My husband and I were told Riley would never walk, talk, or do much of anything. One doctor went so far as to say he wasn’t even going to live. My husband and I ignored all the comments and continued to advocate for Riley.