The NFXF Blog
Early Life Language Development in Fragile X Syndrome
FORWARD // This study is one of the first to examine early language development through vocal production and the language learning environment in infants and toddlers with FXS utilizing an automated vocal analysis system.
8th Annual Cork and Café Fundraiser Recap
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.
Kara and Steve Frech are Standing Up to Fragile X
Kara and Steve Frech received the diagnosis that both of their sons inherited Fragile X Syndrome in 2006. Kara and her mother attended their first NFXF International Fragile X Conference in St. Louis, MO. Filled with information, Kara integrated and applied that knowledge into successful strategies for each of her sons. The National Fragile X Foundation has continued to provide the most up to date information and education to help with daily living.
Best Practices in Fragile X Syndrome Treatment Development
A peer-reviewed paper has just been published that discusses a variety of recommendations at the level of preclinical development, the transition from preclinical to human projects, family involvement, and multi-site trial planning. The recommendations are made with the vision that effective new treatment will lie at the intersection of innovation, rigorous and reproducible research, and stakeholder involvement.
Dillon Kelley: Standing Up to Fragile X in Congress
If you have ever spent more than 5 minutes with Dillon Kelley, you know two things—you know about Fragile X and you know that, one day, Dillon Kelley will be a member of Congress.
Steve and Shirley Kaufman are determined to Stand Up to Fragile X
Steve was diagnosed with FXTAS 8 years ago, and since then, he and his family have provided significant financial support to FXTAS programming at the NFXF. They are supporting our goal to build a worldwide consortium of FXTAS clinics to help improve the rate of diagnosis and the delivery of current treatments. This will also set us up to be ready to conduct future clinical trials for new treatments.
Longitudinal Study of Brain and Cognition in Fragile X Premutation Carriers (TRAX)
Researchers at the UC Davis MIND Institute are examing changes in the brain and cognition associated with aging, in males with the Fragile X premutation compared to those without.
How You Can Stand Up to Fragile X
When people ask me, What do you do? I tell them I help people living with a rare genetic disorder live their best lives — every day. After a pause, their response is often something along the lines of, Wow… that sounds really meaningful! I nod my head [...]
Managing Anxiety … What Works And Why?
Most children who come to see me have a combination of developmental delays, communication challenges and symptoms of anxiety, resulting in frequent tantrums. It is common for parents to share details about their daily struggles.
8 Tips on Transitioning Your Child to Adult Services
Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Here we present eight tips based on research from Morgridge College of Education at the University of Denver.
Meet Riley Lynch
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.
How to Honor the Two Victims with Fragile X Syndrome of the Pittsburgh Shooting
From Jay Souder, NFXF Board President, on behalf of the National Fragile X Foundation: As a parent of an adult son with Fragile X syndrome, the news coming out of Pittsburgh that two of the [...]