The CdLS Blog
Meet Bella
By: Ginny, Bella's Mom Bella is an outdoor-loving, curious 10-year-old who stands 41 inches tall and weighs 29 pounds. She has an oversized personality in a tiny package. She is goofy and has recently found her need for independence. Using a "nubby" on her left arm...
Fun Run a Success for Team CdLS Athletes
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, and...
Dad’s 15th year fundraising for son with CdLS a success
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 CdLS....
Meet Zach!
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,...
Meet Wilson!
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...
2024 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...
The Red Horse Inn and the Tea Room at Gambrill State Park
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...
Meet Anthony
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...
Meet Aubrie
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...
Exciting News: Introducing the New CdLS Foundation Regional Retreats
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...
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