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 […]

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 […]

We will discuss SSI, SSDI, DAC, Medicare, and Medicaid. We will talk about confusing topics like A.) Charging your child rent versus using the fair share formula. B.) Why do […]

CdLS Awareness Day is observed each year in order to shed light on this often misdiagnosed, little-known genetic syndrome. Parents, volunteers and others request official Awareness Day proclamations from governors […]

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 […]

Plans are underway for a fantastic golf fundraiser at Ipswich Country Club for the 29th Annual New England Golf Classic to be held on Monday, MAY 23, 2022! That's right […]