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Fragile X Overview

Fragile X Syndrome (FXS) is the leading inherited cause of developmental disabilities and mental impairment worldwide. As a result, it affects children of all ethnic and racial backgrounds.

Our Mission Fragile X

The mission of the Resource Center is to benefit the lives of individuals with Fragile X-associated disorders and their families through support, education, public awareness, and advocacy.

 

Fragile X Resource Center Group

Message From The Board

Welcome! We have been supporting families on their FXS journey since 1992. We are happy to provide you with local resources and family events. Including play dates, annual BBQ, symposium, and more!

President’s Message Fragile X

Dear Friends,

I want to express my profound gratitude for the remarkable support and unwavering dedication that you, our volunteers, contributors, and partners, have extended to our shared mission. Your philanthropic efforts have left an indelible mark on our local FXS community, the Fragile X Resource Center of Missouri (FXRCMO), and have personally touched me in profound ways, both personally and professionally.

As we rapidly approach the close of 2023, it’s a fitting time to reflect on some of the incredible events and support that have graced our path this year.

In February, seven dedicated advocates journeyed to Washington D.C., representing the great state of Missouri during the National Fragile X Foundation’s annual Advocacy Day. These advocates were a diverse representation of our community, spanning three Congressional districts and encompassing all three Fragile X disorders, parents, siblings, and self-advocates. Their mission was to engage with Members of Congress and their Legislative Aides, educating them on Fragile X and fervently advocating for federal support of Fragile X research funding and continued access to telehealth.

We were honored to participate in the Inaugural Rare Disease Day Symposium at Washington University. FXRCMO stood alongside six other organizations, engaging with experts in genetics and rare diseases. This symposium provided us with a valuable platform to raise awareness, connect with specialists, and promote our cause.

July brought another significant partnership as we proudly sponsored World Fragile X Day once more. FXRCMO has been a dedicated sponsor since its inception in 2021. This year, our collective efforts saw over 500 landmarks worldwide illuminate in Teal, Green, or Orange, serving as powerful beacons to raise awareness for Fragile X syndrome. This event vividly illustrates the global reach of our cause and the unwavering strength of our community. Gathering at the James McDonnell Planetarium, we welcomed a new family into our fold, a moment that fills us with great excitement.

These milestones and numerous other events have only been made possible through your generous support, whether it be through volunteering or donations. Your dedication has been the cornerstone of our success, and I am inspired by the togetherness and resilience that define our community.

As we look forward to 2024, I can’t help but feel a sense of anticipation for what lies ahead. With your continued support, I believe we will achieve even greater heights, bringing hope, progress, and unity to those affected by Fragile X Syndrome.

Thank you for your integral role in our journey and for the positive change we continue to create together.

With heartfelt gratitude and best wishes,

Lesley Clark

President

Fragile X Resource Center of Missouri (FXRCMO)

Fragile X Teal Color Balloon

Resource Center Newsletter Sign-Up Form

Complete the form below and we will add you to our monthly FXRCMO Missouri newsletter! In the message section, let us know how you found our website!

Feel free to include questions when you complete the form. We are happy to answer them and help point you in the right direction. FXRCMO is a nonprofit organization, and we are run by individuals, family members, friends, and advocates of people with Fragile X-associated disorders. So, our goal is to support you on your family’s journey and provide as much assistance as possible.

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