Finding resources and organizing information are two common struggles for many parents in our Network. But great news – CPN recently discovered two amazing tools that promise to make these tasks much easier! In this session, we’re thrilled to have the founders of mejo and Librarey with us. They’ll demonstrate how their innovative tools can […]
Please join us! CdLS Awareness Dinner & Fundraiser Event Honoring Kavin Mistry Meet Kavin, my remarkable cousin whose journey with Cornelia de Lange Syndrome has been one of resilience and inspiration. Born prematurely with multiple medical complications, Kavin was diagnosed with CdLS. Throughout this journey, Kavin and his family have been supported by the CdLS […]
How much is enough for you, as the caregivers? How much is enough for your child? How to incorporate your child’s plan into your own. What is the most effective way to fund the trust? Life insurance? IRAs? Other? How to plan your own Social Security to benefit your child’s future – Learn a technique […]
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, […]
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, […]
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 […]
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 […]
