Nelson Freed experienced both the promise and challenge of genetics. He lived with Gaucher disease, but benefited from treatments that improved the quality of life. As a member of the Genetic Alliance Board, interactions with concerned parents, patients, physicians, and researchers compelled him to strive for expanded resources and services so people can continue living, loving, and advocating for others.

Sadly, his life was cut short by melanoma, and he died at the young age of 54, having made many contributions personally and professionally. He continues to be missed by all those who had the good fortune of knowing him.