Greater Chicago Fragile X

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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!!

07/23/2026

TEAL TAKEOVER for World Fragile X Day 🩵✨

On July 22 we acknowledge our close ties to the Fragile X Community by illuminating the Denver City and County Building. The holiday was spearheaded by FRAXA Research Foundation in 2021 and every year they partner with communities to illuminate landmarks in teal for awareness.

An integral part of our mission is to honor the unique experiences of families impacted by Fragile X. Year-round, we advocate for the advances in research and treatment that are happening from our clinic to around the globe.

City and County of Denver

Thank you to all who came out for the annual Greater Fragile X Chicago for walk on Saturday!
07/13/2026

Thank you to all who came out for the annual Greater Fragile X Chicago for walk on Saturday!

See you Saturday!What: Greater Chicago’s X Strides community event for Fragile XWhen: Saturday, July 11, 2026 at 9:00 AM...
07/04/2026

See you Saturday!
What: Greater Chicago’s X Strides community event for Fragile X
When: Saturday, July 11, 2026 at 9:00 AM
Where: Gallery Park in Glenview, IL. Free parking at Attea Middle School, 2500 N. Chestnut Ave.
Who: Registration not necessary — just show up! All welcome: self-advocates, advocates, allies, families, friends

We will meet near the parking lot, walk the paved lake circle, then play and socialize together at Little Bear Park, a playground at the end of the walk with a water feature!
This event is a fantastic opportunity to build community and make Fragile X friends. We can’t wait to see you soon!

Questions? DM us Greater Fragile X Chicago or Molly Black Jenkins (Molly Jenkins), or email us at [email protected]

Many disability advocates believe two recent actions could negatively affect people with disabilities and their families...
06/25/2026

Many disability advocates believe two recent actions could negatively affect people with disabilities and their families.

1. IDEA and Section 504 enforcement
The administration has moved oversight of IDEA and Section 504 from the Department of Education to HHS and the DOJ. Although this change has already been made, it can still be reversed. Please contact your two U.S. Senators and your Representative and ask them to pressure the administration to return these responsibilities to the Department of Education. Congressional offices track every call, email, and letter, and public input matters.

2. The DOJ’s Olmstead opinion
The DOJ recently issued a formal opinion stating it will not enforce the Supreme Court’s Olmstead decision as it has in the past. Olmstead established that people with disabilities who receive Medicaid services should be able to receive those services in their homes and communities whenever appropriate, rather than being forced into institutions. Many advocates believe the DOJ’s new position undermines those protections. Please ask your Senators and Representative to urge the DOJ to withdraw this opinion and continue enforcing Olmstead.

Please take a few minutes to call, email, or write your elected officials. Every contact is counted, and together our voices can make a difference.

06/05/2026

Most people have never heard of Fragile X syndrome or the Fragile X premutation. Let's change that.

Join us for X Strides 2026 and help raise awareness and funds for individuals and families impacted by Fragile X syndrome. Whether you walk, hike, gather with friends, or take a road trip, every step helps bring hope, support, and progress to the Fragile X community.

✨ Start a team or join an existing team
✨ Fundraise if you choose to do so (it’s not required)
✨ Take photos in your Fragile X gear and share on social media during July - Fragile X Awareness Month

Coming to Conference? Join us for a walk on Friday morning July 17th. We’re doing a quick walk through downtown Louisville before morning sessions begin!

Traveling this summer? Post pics of you and your family and tell us what state you’re in! Our goal is to raise awareness in all 50 states!!

No matter where you are, you can make a difference.

💚 Register today at https://hubs.ly/Q04jQSH20

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

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Chicago, IL

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