This presentation focuses on tools that caregivers can use to encourage communication development for individuals at early stages of development. Presented by Anne Hoffman from Rush University Medical Center.
This keynote session explore completed and active clinical trials relating to Fragile X syndrome. Presented by Elizabeth Berry-Kravis, Craig A. Erickson, and Randi J. Hagerman.
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.
The MIND Group at the University of Minnesota is conducting a survey for parents of children with Fragile X syndrome to learn about how genetic and neurodevelopmental differences impact behavioral strengths and challenges. Parents of 3–17 year old children living with Fragile X are eligible to participate.
Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome. Boys and girls ages 6-18 months with the full mutation may be eligible to participate.
Valero loved Heartland Chapter Vice President Brenda Slama’s sensory room proposal and awarded the chapter with a $6,200 grant during the 2019 Valero Texas Open Benefit for Children.
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.
Your stories help educate the public about Fragile X and inspire more research toward new treatments and an eventual cure. Here’s why.
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.
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.
