Our daughter Aubrie Schilling was diagnosed with Cornelia de Lange Syndrome last year at 15 months old through genetic testing at Nationwide Children's Hospital in Columbus, Ohio. CdLS is a rare genetic spectrum disorder that causes a broad range of potential physical, cognitive, and medical challenges. After this surprising diagnosis, we contacted the CdLS Foundation, […]
Lace up your …. And get ready to walk, run and have fun while supporting the CdLS Foundation. Meet Zachary Isaiah Guran! He is 3 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 sort of discomfort daily. He […]
Let’s hear more from people who have creative scenarios – DIY, Campus, Group Homes, Independent Living. Come to this class prepared for the homework you need to do. How do you get comfortable with even starting? Listen and learn from those who have been successful in setting up and finding a solution that worked best […]
The Walk for Will & Hope is returning to Stony Creek Metropark, 4300 Main Park Drive, Shelby Township, on Sunday, October 13. This event is a wonderful opportunity for community members to come together for a leisurely, untimed two-mile walk to raise awareness for Cornelia de Lange Syndrome (CdLS). All proceeds from the walk will support the […]
Many runners say that running has changed their lives. Team CdLS runners say that they changed the lives of others. Join the Cornelia de Lange Syndrome (CdLS) Foundation at the world-renowned Bank of America Chicago Marathon on Sunday, October 13, 2024. We are so excited to announce that we have an amazing team of 23 […]
The Amber Gaines Memorial Golf Classic is scheduled for Monday, October 14th in St. Louis, MO. Registration and lunch begin at 11am with a 12:30pm shotgun start, followed by cocktails, dinner and prizes at 5:30pm. This long-standing Missouri golf outing is one of the CdLS Foundation’s largest fundraisers. MCWP & PLM’s 36th Annual Amber Gaines […]
Team CdLS members will surely have a unique and memorable experience as we tour every city corner and raise $15,000 for the CdLS Foundation. Join us as we run or walk and enjoy the scenic view of Charm City’s famous landmarks. For more information contact Lisa Schroeder at 860.899.1227.
Neurological diseases are often complex, and life, including decision-making, can be hard to navigate in the face of uncertainty about how the future may unfold. Join us for a discussion of how parents of children with neurological conditions can feel empowered to impact the things under their control, mitigate risk, and feel grounded in their […]
Saddle up and join us …… At Carters Arena in Chiefland, FL, we will have some Halloween-themed rodeo fun while raising awareness and funds for the CdLS Foundation. Come dressed in your favorite costume and enjoy some treats. There will be a costume contest during intermission. The Carter family has been in the rodeo business […]
This Foundation-managed, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore, MD. Foundation Medical Director Antonie Kline, M.D., Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC, has led these clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. Presentations […]