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Blog Home Page (News)2021-04-19T13:28:07-04:00

The NFXF Blog

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NFXF Advocacy in 2021

By |Nov 5, 2020|

Gregg Harper, Fragile X dad, former member of Congress for Mississippi's 3rd Congressional district, offers a message to all Fragile X families following the 2020 election, looking forward to NFXF advocacy in 2021.

Camping and Fragile X

By |Oct 30, 2020|

Because of the hard work of NFXF advocates over the past 20 years, decision-makers in Congress know what Fragile X is. Being present, persistent, and problem-solving is what gets things done in Congress.

Sneak Peek at the International Fragile X Premutation Registry

By |Oct 29, 2020|

The International Fragile X Premutation Registry will help us learn about the Fragile X premutation and will build community and develop a group of individuals interested in participating in research. Learn more in this video from Dr. David Hessel of the University of California, Davis MIND Institute.

Life with Fragile X: Who is Helping Who?

By |Oct 7, 2020|

We’re always looking for new ways to share and raise awareness about Fragile X, life with Fragile X, and the individuals and families it affects. Here we talk with Laura Dooling and her life with three cousins with Fragile X syndrome.

Stopping the Stuffing

By |Sep 17, 2020|

Mouth stuffing, by Mouse or anyone else, is an overfilling of the mouth with the selected food. For kids with FXS, it is usually an adaptive means of trying to succeed with eating.

The 5th Annual Bike to X Out Fragile X

By |Sep 2, 2020|

The 5th Annual Bike to X Out Fragile X is in the books and another success in raising support and awareness of Fragile X in Iowa. Nancy Carlson, the NFXF Heartland Chapter leader and Fragile X mom tells us all about it.

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