Greg’s first exposure to the horrors of myelin disease was when his uncle lost his battle to AMN in 2001 at the age of 44. His brother Mike was diagnosed seven years later with the same disease and is currently experiencing symptoms similar to what his uncle had to endure. Greg had a 50% chance of inheriting the x-ALD gene from his mother but did not. He first met Augusto Odone, Myelin Project founder, in 1992 at the “Lorenzo’s Oil” film premiere in Los Angeles, CA and maintained a close relationship with him until his passing in 2013.
Greg has been working for The Myelin Project since 2012 and currently is Program Director, managing organization development, marketing, and administration. In 2015, he started the Odone Family Support Program to support low-income leukodystrophy families. Greg is a member of the Leukodystrophy Care Network Steering Committee and in 2016, he was elected president of the World Leukodystrophy Alliance (WLA), a group of 14 like-minded nonprofits representing five different firstname.lastname@example.org 1-800-869-3546