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...
by Gabbie Nadeau | Feb 10, 2023 | Media Room, Uncategorized
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...
by Gabbie Nadeau | Jan 18, 2023 | Media Room, Uncategorized
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...
by Gabbie Nadeau | Dec 12, 2022 | Media Room, Uncategorized
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...
by Gabbie Nadeau | Dec 6, 2022 | Media Room, Uncategorized
by Marin Wolf, The Dallas Morning News/TNS | www.disabilityscoop.com DALLAS — The first time Ella Jacobs met Dr. Dan Burch, she was on the verge of tears. Jacobs was afraid Burch, a clinical assistant professor at Texas A&M College of Dentistry, would tell her the...
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