by Ashley Kus | Jul 25, 2024 | Media Room, Uncategorized
By: Nick and Cindy G. Meet Zachary! He is three years old and was born with a rare syndrome called Cornelia de Lange Syndrome. Zach is an incredibly resilient kid. He consistently deals with some discomfort daily. He struggles with hearing and is non-verbal,...
by Gabbie Nadeau | Jul 23, 2024 | Media Room, Uncategorized
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...
by Gabbie Nadeau | Jan 18, 2024 | Media Room, Uncategorized
By Linda Hasecke On our way back to Indiana from visiting our family in Arlington, VA we decided to try to find the Red Horse Inn in Frederick, MD, and the Tea Room at Gambrill State Park. Why? Because they were the sites of the first national gatherings of CdLS...
by Gabbie Nadeau | Jan 9, 2024 | Media Room, Uncategorized
By Mariel Moody Anthony is a 2-year-old sweetheart who goes by the name Ife. Ife (Ee-Fay) means LOVE in the Yoruba language, and he lives up to his name. He was born in September of 2021 and weighed only 4.9lbs. He is tiny but mighty, with a huge personality that he...
by Gabbie Nadeau | Jan 9, 2024 | Media Room, Uncategorized
By Leslie Schilling, Mother to Aubrie Aubrie Adelaide Schilling was born on September 24, 2021. She was born with a head full of hair and was an adventurous girl from the beginning! I am her mama, Leslie, and her dad is Ryan. She adores her sister Zoey, who is 14...
by Gabbie Nadeau | Nov 17, 2023 | Media Room, Uncategorized
Dear Friends, Over the past few years, the CdLS Foundation staff has collaborated with our families and board of directors to re-imagine the CdLS Foundation National Family Conference. Our previous National Conference model was no longer sustainable because many...
by Gabbie Nadeau | Nov 3, 2023 | Media Room, Uncategorized
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...
by Gabbie Nadeau | Nov 3, 2023 | Media Room, Uncategorized
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...
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...
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