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The NFXF Blog

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Steve and Shirley Kaufman are determined to Stand Up to Fragile X

By |Dec 12, 2018|

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.

How You Can Stand Up to Fragile X

By |Dec 10, 2018|

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?

By |Dec 6, 2018|

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

By |Dec 5, 2018|

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

By |Dec 1, 2018|

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.

FXTAS Clinic Directory Now Available

By |Oct 16, 2018|

Looking for a FXTAS clinic? A directory of clinics around the world is now available here.  All of the clinics are part of the International FXTAS Consortium (IFC). The IFC was co-founded in 2017 by [...]

Support the NFXF Through the Combined Federal Campaign

By |Oct 4, 2018|

You can support the National Fragile X Foundation through the Combined Federal Campaign (CFC), the federal government's charitable giving program that automatically deducts your contributions to your charity of choice each pay period. According to [...]