Greg’s first exposure to the horrors of myelin disease was when his uncle lost his battle to AMN in 2001. His brother Mike was diagnosed seven years later and fought the very same illness for most of his adult life. On February 25th, 2020, Greg’s eldest brother Michael lost his battle with AMN.
Greg served as the Program Director for the Myelin Project from 2012 – 2017. In 2015, he started the ALD Family Support Program to support low-income families living with ALD, AMN, and other leukodystrophies. He also worked on the campaign to pass California Assembly Bill 1559 enacting ALD newborn screening in California. Greg was elected president of the World Leukodystrophy Alliance (WLA) in 2016. In 2019, Greg joined the ALD Connect Board of Directors.