CdLS Foundation East Coast Regional Retreat

Camp Saginaw 740 Saginaw Road, Oxford, PA, United States

We're excited to announce the 2024 East Coast Regional Retreat.     Mark your calendars!   Guided by your input, the CdLS Foundation has reimaged what was the National conference into regional retreats. The 2024 East Coast Regional Retreat will be September 13- 15, 2024, at beautiful Camp Saginaw in Oxford, PA. This two-day event offers educational workshops, […]

Courage Parent Network: This Shared Journey: Get to Know the Network

Come meet the faces BEHIND Courageous Parents Network, as well as some of the parents and providers IN the Network. (That includes you, btw.) Spend an hour with us talking about our shared journey and participating in an open-ended conversation touching upon topics that stretch across this caregiving journey. As CPN celebrates our 10th anniversary, […]

Bulls and Barrels Series

Saddle up and join us …… At Carters Arena in Chiefland, FL we have some rodeo fun while raising awareness and funds for the CdLS Foundation. The Carter family has been in the rodeo business for years and their hearts felt the need to give to the CdLS Foundation the best way we know how […]

Aubrie’s Army

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, […]

WI Road Race

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 […]

Parent University: THE MYRIAD OF RESIDENTIAL OPTIONS – WHAT AND WHERE ARE THEY?

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 […]

Walk for Will and Hope

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 […]

2024 Bank of America Chicago Marathon

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 […]

2024 MCWP & PLM Amber Gaines Memorial Golf Classic

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 […]