Greater Chicago Fragile X

Greater Chicago Fragile X The Greater Chicago Chapter of the National Fragile X Foundation. Our email:

[email protected]

Supporting families throughout Greater Chicago, the Fragile X Clinic at Rush University, and the NFXF. Families affected by Fragile X, the leading cause of inherited mental impairment, coming together for support, awareness and fundraising!!

Save the Date! Join us for 2026 on Saturday, July 11 at 9:00 AM at Gallery Park in Glenview, Illinois!
05/03/2026

Save the Date! Join us for 2026 on Saturday, July 11 at 9:00 AM at Gallery Park in Glenview, Illinois!

March is Developmental Disabilities Awareness Month. A developmental disability is a condition that begins in childhood ...
03/08/2026

March is Developmental Disabilities Awareness Month.

A developmental disability is a condition that begins in childhood and affects how a person learns, communicates, or navigates everyday life.

One example is Fragile X Syndrome, the most common inherited cause of intellectual disability. Fragile X is caused by a change in the FMR1 gene and can affect learning, behavior, communication, and sensory processing.

Every brain develops differently, and those differences are part of what make our communities stronger, more compassionate, and more inclusive!

Fragile X syndrome is a rare genetic condition caused by a change in the FMR1 gene — and while it’s the most common inhe...
02/28/2026

Fragile X syndrome is a rare genetic condition caused by a change in the FMR1 gene — and while it’s the most common inherited cause of intellectual disability and autism, it still affects a small percentage of the population, making it a rare disease.

We would like to thank Chicago’s own for his participation in the Rare Disease Congressional Caucus, a bipartisan group of U.S. lawmakers who work together to raise awareness, advance legislation, and increase federal funding for research and treatments that support people and families affected by rare diseases.

Because rare diseases impact small communities, we work alongside other rare disease organizations to amplify our collective voice — pushing for stronger legislation, earlier diagnosis, research funding, and ultimately better treatments and cures. When rare communities unite, we are impossible to ignore.

02/28/2026

2026

02/27/2026

We have a family with a new baby diagnosed with Fragile X in the St. Charles area. Anyone live that way willing to talk to them about schools there and resources? Send me email [email protected] with your email I would love to hook you up. Thank you!

Interested in our efforts? Join us in Washington, DC in two weeks for Advocacy Day! —This week, Congress passed and ...
02/07/2026

Interested in our efforts? Join us in Washington, DC in two weeks for Advocacy Day!
—
This week, Congress passed and the President signed a FY 2026 funding package that protects critical disability programs within the Departments of Education and Health and Human Services. Because of strong advocacy from families and organizations, the proposed cuts that would have harmed individuals with Fragile X syndrome and other developmental disabilities were rejected.

Preserving IDEA funding, UCEDDs, and the Administration for Community Living directly supports people living with Fragile X by protecting special education services, advancing research and clinical expertise, and sustaining community-based supports that help individuals and families thrive across the lifespan.

Thank you to everyone who spoke up. Your advocacy makes a real difference for the Fragile X community.

and , we appreciate your bipartisan efforts to protect people with disabilities!

12/23/2025

The holidays are a beautiful reminder of what makes our Greater Chicago Fragile X community so special — showing up, lifting one another up, and celebrating every step forward together.

This year, together, we made it meaningful:
💚 Raising our voices at Advocacy Day in D.C.
💚 Walking side-by-side at X Strides Chicago
💚 Watching Chicago shine teal for World Fragile X Day (July 22) — officially recognized across Illinois by Governor Pritzker
💚 Gathering for a joyful caregivers’ brunch
💚 Trimming the tree at Brookfield Zoo
💚 Celebrating birthdays, milestones, and everyday victories — in person and online, all year long

From big moments to small ones, this community continues to prove that connection is powerful. You help make Greater Chicago a place of belonging, advocacy, and hope for individuals with Fragile X and those who love them.

Wishing you peace, joy, and warmth this holiday season — and deep gratitude for every way you’ve shown up this year. We can’t wait to keep growing together in 2026. 💫

Happy Holidays from your NFXF Greater Chicago Chapter 💚

Using the “R-word” is never okay. It harms, it excludes, and it reduces real people to a slur. Words matter—that’s why t...
12/03/2025

Using the “R-word” is never okay. It harms, it excludes, and it reduces real people to a slur. Words matter—that’s why the FMR1 gene is now called the Fragile X Ribonucleoprotein 1 gene.

The term “mental r*****dation” has been officially replaced with “intellectual disability” in U.S. federal law, including the Social Security Administration’s (SSA) regulations and the Individuals with Disabilities Education Act (IDEA), following the passage of Rosa’s Law in 2010. This change was made to align with the widespread adoption of the more respectful term by organizations and to reflect a more modern understanding of the condition.

Language evolves, and so should we.

Using the “R-word” is never okay. It harms, it excludes, and it reduces real people to a slur. Words matter—that’s why t...
11/30/2025

Using the “R-word” is never okay. It harms, it excludes, and it reduces real people to a slur. Words matter—that’s why the FMR1 gene is now called the Fragile X Ribonucleoprotein 1 gene. Language evolves, and so should we.

10/12/2025

Programs supporting students with rare, complex disabilities have lost millions of federal dollars.

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