The Amber Gaines Memorial Golf Classic is scheduled for Monday, October 11th in St. Louis, MO. Registration and lunch begin at 11am with a 12:30pm shotgun start, followed by cocktails, […]

Today, many people with special needs live in some type of community setting.  With many housing options to choose from, how do you choose the right one for your child.  […]

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 […]

A smile from a child with CdLS inspires Team CdLS runners to turn their love of the sport into a passion to help raise funds for the hundreds of individuals […]

We have worked all year to take next steps.  But it is easy to get caught in THE GAP. Sometimes, when we are working toward a big goal, we only […]

Losing a loved one with CdLS at any age can be life-altering. Parents, siblings, relatives and friends feel tremendous loss and many times have a difficult time understanding why. It […]

February 12th is CdLS Remembrance Day, we ask everyone, everywhere, to light a candle in remembrance of each and every one of our loved ones who are no longer with […]

Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers […]

In this class, we will discuss how to prepare siblings and future caregivers so that they feel comfortable taking over the role. Let’s bring up the tough topics. We as […]

We understand that often we as parents put our children first. It’s natural. But we need to make sure we are financially secure as well, because without us, our children […]