Losing a loved one with CdLS at any age can be life-altering. Parents, siblings, relatives, and friends feel a tremendous loss and often have difficulty understanding why. It is so […]

This is for our new participants as well as those who have been with us before. We will review the basics and hear about what’s new. What do you have […]

Join families, board members, and staff members on Rare Disease Day, February 29, 2024, for a viewing party. Many caregivers for children or adults who are disabled or medically complex […]

We are excited to share that there will be a clinic on March 13, 2024 at Shriners Children's Salt Lake City. The clinic is a wonderful opportunity to meet with […]

Join us for a fundraiser benefiting the CdLS Foundation for Zack Homan’s CBSL Project Prizes, Silent Auction, Dinner, and Drinks! Holy Ghost Hall 7960 Mill Station Rd Sebastopol, CA 95472

We hear from so many families about how they are confused as to how to use many tools we now have for planning for our loved one. Some of the […]

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 […]

Let’s meet some service providers that assist in vacation planning when you have a family member with unique needs. We’ll hear from some families who had successful and amazing experiences. […]

Hosted by Emily Munoz, mom to Damien and Paula Messer, mom to William Saturday May 4th, 2024 11:30am - 3:30pm  Lambert’s Point Community Center  1251 W. 42nd St. Norfolk, VA  […]

Family/Sibling communications. What they should know. What do they think they know and don’t know? If utilizing Corporate Guardians and Trustees, when to start to bring them into your process? […]