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 […]

Anticipating the birth of a child can be one of the happiest times for parents. But when babies have life-threatening medical issues and begin their lives in the NICU, everything […]

For the entire month of March, when you purchase a $2.50 reusable Community Bag at the Stop & Shop located at 498 Bushy Hill Road, Simsbury, CT, $1 is donated […]

Please join us to explore how completing healthcare advance directives for/with your child can support your family’s goals and wishes. We will discuss the importance of discussing and documenting healthcare […]

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 […]

Join us for a new, fun event to raise awareness and funds for our CdLS community. The Eckerd College Science Outreach Club has recently established a Students for Rare chapter affiliated with […]

Join a panel of siblings to gain insights into the fears and worries that siblings carry, the things that helped them (and those that didn’t), and how loving a brother […]

Exciting news! The New England Golf Classic is going virtual!! Join us for an interactive, new way to continue raising awareness and funds and keeping the tradition going. You can play […]

  Meet Zuri, Our Joyful Bloom! Zuri is a bright light in our lives, full of strength, love, and a spirit that keeps blooming no matter the season. She lives […]