NGF Mentor: Betsy Simon

Betsy Simon
California
Adult with Gaucher advocate/speaker
Email: betsy@familysimon.net

Diagnosed in 1982 at 3 years old I have lived almost my entire life with Gaucher Disease. I don't ever remember a time when I didn't know I had Gaucher Disease. Even though I started treatment as soon as it became available in 1991 I had already had suffered some of the effects of my disease. In 1987 I had one of the first partial spelectomies in the country.

in 2001 I met and married my husband who is a Rabbi. We have a 6 year old daughter who is a carrier of Gaucher Disease.

I was 26 years old before I met another person who had Gaucher Disease. I have moved to many places around the US and have met many physicians who have never heard of Gaucher Disease. I want to be a mentor to help others who may feel overwhelmed and alone.