The CdLS Blog
Team CdLS: Runner Spotlight – Jane Champion
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...
Team CdLS: Runner Spotlight – Hannah Brockstein
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....
Team CdLS: Runners Spotlight – Rachel Terry and Kyle DeAngelis
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...
Team CdLS: Runner Spotlight – Aimee Schiferl
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...
Team CdLS: Runner Spotlight – Peter Wagner
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...
Selective Mutism Survey Study – Participate today
Asmita Mistry, M.A. CCC-SLP, Speech Language Pathologist, is currently a doctoral student at Kean University in New Jersey. She is conducting a survey study on selective mutism in individuals aged 4 to 25 years. Selective mutism is characterized by the inability to...
Artificial Intelligence Detects Risk of Genetic Syndromes in Children
Children’s National Hospital’s AI enables rapid genetic screening. Artificial intelligence (AI) machine learning is increasingly being used as a diagnostic tool for health care, biotechnology research, medical care, and life sciences. A new study published today in...
Meet the Walgreens Ambassadors
Thank you for scanning the QR code on the Walgreens Scannable event poster to learn more about the five Ambassadors! Meet Taryn! Taryn has CdLS, but that does not define her as a person. It merely helps explain some of the challenges she faces like motor...
How the Empowerment Team Dealt with COVID-19
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...
Awareness Day Idea – Random Acts of Kindess
A fun way to celebrate Awareness Day is to do a random act of kindness for someone in your community. Whether it is buying the coffee for the person behind you in the Dunkin Donuts drive through, or leaving your favorite book for someone to find. These actions can...
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