Three decades of friendship. One incredible cause. 26.2 miles!
In 1992, Karen and Kiki (that’s us!) met as freshmen at the University of New Hampshire. We instantly connected while walking home from a class one day and have been best friends ever since! Fast forward more than 30 years, and the two of us—now mothers, advocates, and runners—are gearing up for an incredible journey: running the 2025 Chicago Marathon for Team CdLS!
We’re running not only for ourselves but for Karen’s son, Luke, and every family affected by Cornelia de Lange Syndrome (CdLS). Luke is a happy, lovable 17-year-old with profound disabilities. Born with CdLS, a rare genetic disorder that affects many aspects of his physical and intellectual development, Luke’s world is one full of challenges but also of joy, love, and laughter. While Luke’s journey has been unique, there is one thing that has remained constant: the unwavering support of his family, friends, and the CdLS Foundation.
The CdLS Foundation is a lifeline for families living with Cornelia de Lange Syndrome. The foundation provides vital resources like medical and educational support, community connections, and a network of people who understand the daily challenges of living with CdLS. While every individual with CdLS is unique, the syndrome often requires lifelong care and support.
Luke is a constant reminder of the resilience of the human spirit. Although he faces obstacles, he also brings incredible joy to everyone around him. Whether it’s his big smile, his infectious laugh, or the special bond he shares with his "Auntie Kiki"—who’s been there since day one—Luke is a shining example of how love and community can overcome any challenge.
How You Can Help
By donating to Team CdLS, you are helping fund critical resources that improve the lives of families affected by CdLS. Your support enables the foundation to continue providing educational tools, medical advice, and emotional support to those who need it most. Your donation will also help fund important research to better understand CdLS and how to improve the quality of life for those living with the syndrome.
Every donation, big or small, brings us one step closer to a brighter future for families living with CdLS! Donate today to Team CdLS and make a difference in the lives of children and families affected by Cornelia de Lange Syndrome!
