'Quest' Follows Exec's Mission For A Cure
By Michelle Archer
USA Today
12/17/07
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Contributed photo
Augie Nieto has proclaimed himself as a face of ALS and appeared on Jerry Lewis' Labor Day MDA telethon.
Sometimes it’s easy to pinpoint the moment things go wrong.
For fitness executive Augie Nieto, it started with a backache in 2004. Other signs followed: weakness, slowed speech, involuntary muscle spasms in his right arm, difficulty shaving. After being unable to hold on to a tow rope while waterskiing in early 2005, Nieto went to the Mayo Clinic.
Several tests and a few days later, Nieto returned home to Corona Del Mar, Calif., with a dreadful verdict. Doctors were fairly certain he had amyotrophic lateral sclerosis, also known as ALS, or Lou Gehrig’s disease. He was 47.
“Augie’s Quest,” co-written with T.R. Pearson, is about Nieto’s battle with ALS and his mission to find, if not a cure, at least an effective treatment for the disease that’s killing him.
ALS is a fatal disease that attacks motor neurons in the brain and the spinal cord, leaving the neurons unable to control muscle movement. As the neurons lose function, the patient becomes paralyzed. Because ALS victims go on thinking, seeing and hearing as well as they did before ALS, they are essentially trapped in a degenerating body. Most patients die of respiratory failure within three to five years.
Not only is there no cure, there is only one FDA-approved drug for ALS, and it, at best, extends life for a mere two or three months.
Nieto, who built a fortune by popularizing the Lifecycle exercise bike, had the means to seek no less than seven second opinions from coast-to-coast. A few short months and an unsuccessful suicide attempt later, Nieto digested what he learned.
No one knew what caused ALS, and research efforts were scattershot, underfunded and largely conducted in an uncoordinated vacuum, he decided. “That’s no way to run a business,” he says.
Nieto doesn’t dwell on the larger issue of the state of health care in the USA, but its dysfunction is revealed time and again.
Nieto has also proclaimed himself as a face of ALS, saying that as in business, it’s important for the disease to have a “brand.” Now in a wheelchair and experiencing speech difficulties, he’s appeared in The Wall Street Journal, on the “Today” show and on Jerry Lewis’ Labor Day MDA telethon.
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