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Blog2020-09-08T11:03:26-04:00

The NFXF Blog

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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.

Sophia James: Life as a Sibling of Someone with Fragile X Syndrome

By |Jul 30, 2020|

Sophia James, a top 10 finalist in the latest season of American Idol, talks about being a sibling of her brother James, who has Fragile X syndrome. You can view the video or read the transcript below. There is so much in what she says — take the time to watch/read it. It’s well worth your time.

Shining a Light on NFXF’s Global Impact

By |Jul 29, 2020|

In 2019, Dr. Tabatadze and her colleagues ─ a small team of doctors ─ established the first local Fragile X laboratory in Georgia. They conducted a pilot study and tested 250 patients with autism spectrum disorder (ASD) and intellectual disabilities; the study yielded 11 positive results for Fragile X.

Getting Comfortable Wearing a Mask

By |Jul 29, 2020|

Real-life tips from a mom, Jayne Dixon Weber, who’s already going through this with her own son, plus a a quick video from Rebecca Shaffer to guide you through the process of getting your child comfortable wearing a mask.

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