The CdLS Blog
Thank You, Dr. Potter
The CdLS Foundation and community have had the privilege of having Dr. Carol Potter as part of our family for over 20 years. Her insight, knowledge, and compassion have enhanced our mission of ensuring individuals living with CdLS and their families are cared for and...
Meet Joey
Joey was born full-term on April 26, 2004. He weighed 7 lbs—1 oz. We had no indication anything was going on throughout the pregnancy. We were shocked the next day when the doctors started to tell us they suspected Joey had Cornelia de Lange Syndrome — that day...
The Rauscher Family
Dawn and Rolfe Rauscher Every journey through the world of CdLS is different. Unfortunately, some journeys are shorter than others. When an individual's life with CdLS ends, their families often continue to lean on the Foundation for support services and guidance. In...
Words of Wisdom: Fermina Lopez
Fermina Lopez My transition to adult care has been a long process. In my early teens, my doctors and I started discussing how it would look when I transitioned to adult care. I had a primary care doctor and an OB/GYN during my teens. My doctors explained how health...
Sam Luce
Tim Luce and Miguel Avila Tim’s Story … Sam, my son, was born on October 19, 1987. When Sam was young, I called and followed all the children I could find who were mildly affected. I wanted hope and was trying to see what our life would be like with Sam. We were...
Words of Wisdom: Rachel Busch
Rachel Busch Rachel was born in May of 1985 to Maryanne and Doug and has been part of the CdLS Foundation since 1999. She currently lives with a roommate in Michigan. Rachel is a force to be reckoned with for those who don't know her story. She is someone who has...
Meet Ezra
By Cassandra Brown Ezra was born on the first day of “Heart Week” on February 7, 2020. He is such a happy-go-lucky kid, always laughing and smiling. He lights up any environment and is always friendly and outgoing. Ezra was diagnosed when he was 11 days old with the...
Thank You … International CdLS Awareness Day was a Success
I presented at the Disorders of Chromatin & Transcriptional Regulation Symposium on your behalf on International CdLS Awareness Day. I had a chance to share both the beauty of children and adults with CdLS and your challenges as parents and caregivers. The talks from me and the other parent advocates were well received. Researchers were in awe of your ability to navigate the terrain of rare diseases driven by your love for your children.
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 her challenges, like motor skills,...
Team CdLS Baltimore Social Team
You can join the Team CdLS Baltimore Social Team! To receive an added discount on registration, join the CdLS Social Team. Regardless of when your teammates register, the entire group will get a $10 refund/discount once your team reaches 10 or more members. The 10th...
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