The CdLS Blog
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...
On the Cover: Bryn Clary
Bryn was born on December 25, 2000, with tons of curly hair, a sweet upturned nose, and the funniest little cry I had ever heard. She weighed 6 lbs., 8 oz, a fairly normal weight, but she a full two pounds smaller than her big brother, so she seemed tiny to me. She...
Run for a Worthy Cause
Join Team CdLS at the 2023 Bank of America Chicago Marathon. Go the distance in 2023 by joining Team CdLS in Chicago! Have fun and raise funding to support families impacted by this rare genetic disorder. Walk away from the race with new friends, a sense of...
Workplace Inclusivity for People with Genetic and Chronic Conditions
By Stanley Clark, Guest Contributor Workplace inclusivity for people with genetic and chronic conditions is a critical issue affecting millions worldwide. For example, when you're struggling with a severe condition, it can be hard to decide whether to keep working....
Medical PTSD: It’s Real and Impacts My Everyday Life
www.themighty.com Most of us don’t like going to the doctor or getting blood drawn or being in a hospital. But can you go so far as to say you’re traumatized by it? Some of us can. Medical trauma or medical post-traumatic stress disorder is painfully...
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