The CdLS Blog

Inspiring Individuals Asmita and Kavin Mistry Kavin is a 23-year-old young man who has a strong affinity for music. He loves to sing songs in multiple languages, from genres and artists around the world. Music motivates and energizes him, but it also calms and soothes...

My name is Jane and I am is running in the 2022 Chicago Marathon as part of Team CdLS in honor of my sister Julie, who has Cornelia de Lange Syndrome (CdLS), and to support the CdLS Foundation. CdLS is a rare genetic syndrome present from birth, which causes a range...

My name is Hannah Brockstein. I grew up in the suburbs of Chicago, but am currently getting my Ph.D. in Clinical Psychology at Ohio University in Athens, OH. My parents and I had planned to run the 2020 Chicago Marathon with Team CdLS in memory of my brother, Jason....

My name is Rachel Terry. My boyfriend, Kyle DeAngelis, and I both live in Saratoga Springs, NY. I was born in Johnson City, NY. Kyle was born and raised in Syracuse, NY. Our motivation for running with Team CdLS is to help make others more aware of CdLS and run for a...

My name is Aimee Schiferl. I was born and raised in the suburbs of Chicago. I graduated from Loyola University Chicago in December 2020. I have been living and working in Chicago since. I am a tax accountant and had a  busy season where I did not see the light of day...

I live with my wife, Kathy, in Cape Neddick, Maine - the very southern tip of Maine - right along the coast. We also have a cottage in Boothbay, Maine - up the coast about two hours. Much of my running is along the ocean's edge - cool breezes and great views! My...

As we know COVID-19 has changed the way we interact and socialize with others. Most of our high function adults with CdLS were struggling with managing changes to their daily routine such as not being able to; attend day programs, return back to work or go out into...