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Yearly Archives: 2018

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Kara and Steve Frech are Standing Up to Fragile X

By |2018-12-27T09:53:24-05:00Dec 27, 2018|Community|

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

By |2018-12-17T18:11:01-05:00Dec 17, 2018|Research|

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.

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

By |2018-12-12T11:05:23-05:00Dec 12, 2018|FXTAS, Hope & Inspiration|

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 |2018-12-10T21:00:41-05:00Dec 10, 2018|Foundation|

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 »

Meet Riley Lynch

By |2019-05-30T19:14:16-04:00Dec 1, 2018|Real Life Stories|

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.

Lets Talk Married with (Fragile X) Children

By |2019-09-27T10:27:13-04:00Nov 16, 2018|Education, Webinar|

Many parents may worry that even the strongest marriages may buckle—or worse—under the intense demand of raising a child with special needs. Licensed marriage and family therapist Diane Simon Smith tackles this topic for couples raising children with Fragile X syndrome.

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