2024 Butterfly Parade and Community Walk

Our daughter Alex is a butterfly…

Why do I say that? For the incredible qualities that a butterfly represents and have become the foundation of what Alex exemplifies in life…personal transformation, change, hope, endurance, courage and strength and beauty.

  In 1995 Alex was born with Turner Syndrome, a chromosomal genetic disorder that affects 1 in every 2500 live births of girls where only 1% survive. At 2 months old, she was the earliest diagnosed case in Colorado. There was limited information and resources about TS and to help parents navigate the difficult medical challenges associated with rare genetic disorders.  Since the beginning, Alex has faced multiple complex medical conditions, social, emotional challenges and non-verbal learning disabilities that at times seemed insurmountable, but she is a survivor and chooses to thrive in life!

As parents, Ed and I struggled to find comprehensive and coordinated medical care that would support girls with TS and their changing needs.  It was with this recognition that we came together with Marybel Good, another incredible TS mom and my mom Florrie Katchen to create the vision for the eXtraOrdinary Kids Turner Syndrome Clinic at Children’s Hospital Colorado.  Through the amazing work of Turner Syndrome Colorado and the incredible partnership with Children's Hospital Colorado has been setting the standard of care across the country for the last 9 years.

The Clinic continues to provide vital access to specialists and services, comprehensive, coordinated care that addresses physical, developmental, and emotional needs. I

In addition, they are a leader in research efforts with a data registry that offers valuable information about girls and women with TS nationwide.

We would love to have you join us in reaching our goal to raise $75,000 to sustain the clinic for the next two years. Every contribution matters and helps maintain the care and research that so many depend on.

We are incredibly grateful for your ongoing love and support, appreciate your commitment to this cause and to the Turner Syndrome community. 

XO Kathy, Ed, Alex and Florrie

Thank you to these generous corporate sponsors!