As books about ALS go, Augie’s Quest: One Man’s Journey From Success to Significance is a little different from most. Written by Augie Nieto, co-chairman of MDA’s ALS Division, and writer T.R. Pearson, with a forward by Mitch Albom, author of Tuesdays With Morrie (also about ALS), it’s scheduled for release by Bloomsbury USA this fall.
For reasons that remain unexplained, a large proportion of people with ALS are physical and intellectual high-achievers. ALS ranks are filled with athletes like Lou Gehrig, scientists like Stephen Hawking and extraordinary entrepreneurs like Augie Nieto.
Many personal stories of the ALS experience describe a life trajectory that ascends steeply from youth to middle age and then suddenly is stopped by ALS. A period of intense depression after diagnosis often is described, sometimes mixed with anger, followed by a reassessment of life’s meaning and a coming to terms with death.
Nieto’s story begins this way too, but by the middle of the book, it takes another direction. From then on, the emphasis is on the coalition formed by philanthropist, entrepreneur and ALS patient Nieto; Sean Scott, head of what was then the ALS Therapy Development Foundation in Cambridge, Mass.; and late MDA President & CEO Bob Ross and his successor, Jerry Weinberg.
This coalition became the nexus of MDA’s Augie’s Quest, a fast-track ALS research initiative based largely at the industrial-scale laboratories of the ALS Therapy Development Institute (formerly the Therapy Development Foundation).
The quest has been fueled by new ideas at MDA about applying a business model to supplement its academia-based research in ALS, infusions of cash from MDA’s Augie’s Quest events, and Sean Scott’s creative intelligence.
Near the end of the story, Augie writes that his goal has been to “put a face on ALS and leverage all of the goodwill MDA had earned through the years. So when we developed our Augie’s Quest logo, I said I wanted ‘Augie’s Quest’ to be on the outer edge. I said I wanted to clearly describe the mission — ‘Cure ALS.’ I said I wanted ‘MDA’ in the middle because they’re our core, our support.”