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Greg Benton

Program Director & Marketing Manager

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 currently serves as both the Program Director & Marketing Manager. In 2015, he started the Leukodystrophy Family Support Program to support low-income leukodystrophy families living with ALD, AMN, and other leukodystrophies. Greg was elected president of the World Leukodystrophy Alliance (WLA) in 2016 and led the negotiated merger of the ALD/AMN Global Alliance. 1-800-869-3546


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