by Ashley Kus | Jul 30, 2024 | Media Room, Uncategorized
On July 24, $1,500 was raised for Team CdLS – athletes running the 2024 Bank of America Chicago Marathon in October for the Cornelia de Lange Syndrome (CdLS) Foundation. CdLS is a rare genetic spectrum disorder that causes a broad range of physical, cognitive,...
by Ashley Kus | Jul 25, 2024 | Media Room, Uncategorized
Mike F. raised nearly $50,000 for the CdLS Foundation earlier this month during his annual backyard obstacle course. The event was Mike’s 15th year of fundraising in honor of his son Connor, who was born with the genetic disorder Cornelia de Lange Syndrome, or...
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 Ashley Kus | Jul 23, 2024 | Uncategorized
By: Amelia S. Hi, I’m Amelia. This is my husband, Brandon, and our son Wilson. Wilson was born in November of 2020. If being pregnant during a global pandemic wasn’t stressful enough, at 28 weeks, we discovered Wilson was growing at a slower rate and had a heart...
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...
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