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The NFXF Blog


Fragile X and Face Masks (Not What FXFM Stands For)

By |Oct 14, 2020|

Looks like the wearing of face masks is here to stay for a while, so you may as well try to have some fun with it. I know, I know – they are not that fun. But, I did have a parent send me a link to a mask that has a chew cord as part of the mask. I just love how creative people are.

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.

From One Caretaker to Another

By |Aug 6, 2020|

Being the caretaker of someone with special needs, such as Fragile X syndrome, can be daunting. Isabel looks back at her journey, sharing advice and encouragement for new caregivers or those who have been doing it for years.

COVID-19 Check-In: Month 5

By |Aug 1, 2020|

What can we do to take care of ourselves and to help others? A mother takes a step back to imagine what life during a pandemic looks like through the eyes of her son, who has Fragile X syndrome.

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