National Fragile X Foundation, Heartland Chapter - Iowa and South Dakota

04/16/2026

Another reason to attend the conference. You need to meet Dillon if you haven’t. 🥰

03/10/2026

12/16/2025

Maya is soaring.

With the full mutation of Fragile X syndrome, Maya’s path hasn’t been easy, but her determination, supportive parents, and the encouragement she found at NFXF events helped her dream big. Now 22, Maya is finishing her last semester of college and recently landed an internship! Her story is a reminder that females with Fragile X can achieve so much when given the chance.

💚 That’s why we’re partnering with The LivJoy Foundation for a new webinar series in 2026 focused on supporting girls and women with FXS, so they feel seen, heard, and empowered.

Donate today to support Maya and others like her: https://hubs.ly/Q03Ypnmt0

12/13/2025

One of the 'stars' in the Fragile X World. Thanks to Dr Berry-Kravis for her unwavering work and dedication.

Treating rare neurological diseases in children is a difficult, sometimes gut-wrenching process with no guarantees, but a Chicago doctor is determined to extend and save lives.

10/28/2025

From The National Fragile X Foundation

Shionogi would like to share their progress on the EXPERIENCE clinical development program (Zatolmilast) and what to expect next. While we wait for the findings of the studies, the open label extension study will continue.

Read the letter from Chief Medical Officer, Dr. Juan Carlos Gomez here:

09/02/2025

07/24/2025

07/08/2025

July is Fragile X Awareness month! Share your story!

07/06/2025

FXPOI (Fragile X-associated primary ovarian insufficiency) is a condition in which the ovaries are not functioning at full capacity in an individual with the FMR1 premutation.
About 20% of women who carry a Fragile X premutation over their reproductive life span develop POI, compared with only 1% in the general population.

Learn more at: https://hubs.ly/Q03vKJqf0