by Gabbie Nadeau | Sep 5, 2023 | Media Room, Uncategorized
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...
by Gabbie Nadeau | Sep 5, 2023 | Media Room, Uncategorized
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...
by Gabbie Nadeau | Sep 5, 2023 | Media Room, Uncategorized
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...
by Gabbie Nadeau | Sep 5, 2023 | Media Room, Uncategorized
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...
by Gabbie Nadeau | Jul 28, 2023 | Media Room, Uncategorized
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...
by Gabbie Nadeau | May 16, 2023 | Media Room, Uncategorized
Hello CdLS Family, I was in beautiful Sienna, Italy, for International CdLS Awareness Day. I presented at the Disorders of Chromatin & Transcriptional Regulation Symposium on your behalf on International CdLS Awareness Day. I shared with the scientists how...
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