1989 - The first CdLS Awareness Day is observed.

Foundation staff organized an international “yard sale” to kick-off a tradition that has lasted for decades. In 2019, Awareness Day, celebrated its 30th anniversary. 

This year also marked the creation of the Regional Coordinator (RC) program, which volunteer parents across the country offer support to fellow families with new diagnosed loved one. Today there are over 90 active RCs across the United States helping new families who join the CdLS community every day.