Over the past three years I have come to know some pretty amazing people who navigate through some very challenging obstacles in their lives.
Cornelia de Lange Syndrome (CdLS) is a rare genetic syndrome that causes a range of physical, cognitive and medical challenge. Team CdLS takes on the challenge to better the lives of people with the syndrome - many of whom struggle to talk, eat and walk.
I can honestly say that my "job" isn't just "work", it has become a part of not only my life, but my family's. The people met we've since I began my endeavor at the CdLS Foundation have become an extended family. My heart is filled with joy when I learn about a milestone that has been accomplished and it equally breaks when I learn of the struggles they are experiencing.
There is no cure for CdLS, but you can help ensure individuals with CdLS and their families are provided with the guidance and resources to navigate this rare, often times complicated and unique syndrome.