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, our staff has been reflecting on how important our connections are, how much they build our capacity to do the things we do at CPN,…

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 by putting on a Bulls and Barrels family fun event! We will be putting on a 5 event buckle series and a portion of all…

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 struggles with hearing, and he is non-verbal which makes communication and caring for Zach very complicated. Some of his biggest challenges include feeding, swallowing, digestive…

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 for them. Register now

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 athletes this year!! Please support this fantastic team by donating here. Running not your thing, another way to support the team is to sign up…

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 Memorial Golf Classic is slated for Monday, October 14th at the Tapawingo National Golf Club. Participants will enjoy 18 holes of golf, brunch, dinner, and…

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 family values. Featuring Dr. Lauren Treat and several experienced parents. Lauren Treat, MD is a child neurologist who has special training in caring for individuals…