Sometimes you just luck into a special moment. That is what happened to me and several other people last Wednesday at the International Health, Racquet and Sportsclub Association (IHRSA) conference and trade show in Las Vegas. I made my way to the Octane Fitness booth for an appointment, but all my plans went out the window when I found out that Augie Nieto was going to use a specially motorized xRide seated elliptical at the Octane booth.
I was amazed. Nieto was diagnosed with amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease) in 2005, and the condition now prevents him from speaking and makes it necessary for him to use a breathing machine and a wheelchair. The thought that he could use an xRide seemed miraculous to me.
A crowd of Nieto's friends (one of them being Chris Clawson, president of Life Fitness, which Nieto founded) and admirers began to gather as word got out. After more than 15 minutes of positioning Nieto on the machine, tightening straps to hold him on and confirming with him that he was comfortable, the motor began to whirl, and off Nieto went (in some snappy footwear, no less). The motor moved the pedals, but the machine was built so that Nieto could overpower the motor and move the pedals himself. It seemed obvious from the smile on Nieto's face as the crowd cheered (and a few people teared up) that he was doing just that. This was a big moment, and watching the joy on his face and the face of Lynne, his wife, put me on a high that lasted the rest of the day.
After the IHRSA show, Nieto informed Club Industry that part of the reason for his improvement (besides the love and support of his family and friends, his athletic background and his relentless desire to keep pushing forward) is due to taking Gilenya, an FDA-approved drug for multiple sclerosis. Nieto says he pays $50,000 per year to use the drug, and he and Lynne have donated $750,000 to pay for the balance of the fundraising for the Phase 2a trial of the drug.
While standing at the Octane booth watching Nieto, I spoke with Tim Porth, co-founder and executive vice president of marketing and product development at Octane Fitness, Brooklyn Park, MN. Porth says that Nieto remains strong, attending each of the Octane board meetings. (He is chairman of Octane's board.) And the drug also has allowed Nieto to once again eat pudding and ice cream without his feeding tube. I can only imagine what it would be like to taste those treats again after a long absence.
Nieto had used a motorized xRide for about six months in 2008 as part of his physical therapy, Porth says, but then his condition deteriorated to the point where Nieto told them to throw it out because he could no longer use it. However, Nieto recently informed them that he needed another one built. Octane began work on the project and delivered the latest version to Nieto, who used it for the first time at his home in California just a few days prior to the IHRSA conference. Octane then shipped the xRide to the show so Nieto could demonstrate it there.
Nieto's determination to improve and find a cure for ALS through his efforts with the Muscular Dystrophy Association and his foundation, Augie's Quest, is inspiring. And while I was not at the Bash for Augie's Quest on Thursday night, our executive editor, Stuart Goldman, was. (He also was the one beside me taking the video of Nieto on the xRide.) At the Bash, which raised $1.6 million, Nieto did another workout by using a leg press machine, generating cheers from the Bash attendees.
Not all ALS patients are as blessed as Nieto to have the resources that he has, but he does not appear to be squandering those resources. Instead, he is using them to help himself and others like him. That is a special gift the fitness industry has been blessed to have.