Shining a Light
Posted On Aug 18, 2016
In the quest for an ALS cure, Augie Nieto, who was diagnosed with the disease eight years ago, leads the charge with smarts, determination, and above all, humor.
BY: RUCHEL LOUIS COETZEE
Few encounters have the ability to stop you in your tracks—but that’s precisely what happened as I read the message on a small screen as I greeted Augie Nieto. “First, I would like to take exception to the descriptive of ‘icon,’” Nieto wrote, in reference to an email I sent the day prior. “I associate that word with individuals who are no longer with us. I have every intention of being around for many more years.” Before I could gather my thoughts, I blurted out that according to my definition, an icon is a person who is critically admired, which makes him an icon—albeit a living one—in my books. We were in his living room, overlooking the Pacific Ocean. Nieto, my handsome and charming host, was diagnosed with ALS (more commonly known as Lou Gehrig’s Disease) eight years ago, at age 47. He sat motionless in his wheelchair, surrounded by computers and a monitor equipped with a speech-generating DynaVox communications system. A smaller monitor was turned outward, which allowed visitors to read his messages. Nieto’s arms rested on the side of his chair with his hands placed gently on soft cloth. A tracheostomy was inserted for ventilation. His feet were covered in socks that separated each toe—they were one of his few muscle groups still working and they manipulate the large computer trackball attached to the base of his elaborate wheelchair.
At that moment, a golden Labrador came bounding into the room, followed by the laughter of Augie’s slender and attractive wife, Lynne. She informed me that I have to be somewhat patient for my answers, as Augie types 40 words per minute. I asked her what impresses her most about her husband since his diagnosis. “Just the fact that he has continued,” she
replied. “He attempted suicide within months of being diagnosed, and at the time he was not yet really physically affected. But he came out of that and refocused on living with the disease, instead of dying with it. He has brought the entrepreneurial spirit that he uses in business to help those who have ALS and their families. He’s still very active businesswise, and is on the boards of many large clients.”
By many accounts, one can understand the desire to end his life. Here was a man who was directing a large company where every business decision was focused on the fitness industry. A man who had a vision as a college undergrad to place Lifecycles in every small gym around the country. A man who co-founded Life Fitness, one of the largest manufacturers of cardiovascular and strength fitness equipment for commercial and consumer use in the US, who revolutionized the fitness industry today. “I knew I was not smart enough to go to graduate school,” says Augie, in his self-depreciating way. “I saw my dad who wanted to start his own business, but was trapped by the need to provide for his family. I wanted to take the risk early on.”
Charging forth in battle is a way of life for Augie. He admits that the moments were dark in his hospital room following his suicide attempt. His son Austin had informed him that his father was no longer his hero. Meanwhile, Lynne reminded him they were in the fight together forever, in sickness and in health. Before leaving that hospital bed, Augie’s resolve had strengthened. He asked his son to give him the chance to win back his respect. He thanked his family for their love and support, and made up his mind to find the cure for ALS. The mission? Augie’s Quest. It’s mission statement? To slow down, stop, and then reverse the disease.
This was easier said than done. Most people who are diagnosed with ALS are between the ages of 40 and 75— two out of every 100,000 people every year. Given these low statistics and the fact that most of the funds raised by the Multiple Sclerosis Society were concentrated on the cause, Augie knew he had to do something. “One of the challenges we face is that ALS is an orphan disease,” he says. According to Lynne, 50 percent of those diagnosed with ALS die in 18 months, and 90 percent of individuals die in three to five years. “The same number of people are diagnosed every year with MS as ALS, but no one knows that because the progression of ALS is so quick that people don’t live long enough for the tested patient population to be larger,” she says. “Augie’s goal became identifying drugs that slow down disease progression, so a large enough patient population existed for pharmaceutical companies to have interest in funding.”
“50% OF THOSE DIAGNOSED WITH ALS DIE IN 18 MONTHS AND 90% OF INDIVIDUALS DIE IN THREE TO FIVE YEARS.”
In 2005, on the first day of his new mission, Augie found himself at the Muscular Dystrophy Association’s regional offices in Orange County, California, with a goal: raise one million dollars to find a cure. Shannon Shryne, VP of Business Development, humored Augie. The Association had never raised anywhere near that goal but as long as Augie could communicate, he was going to do serious damage to any middle-of-the-road thinking. Audacious thinking was his new normal.
What followed was a Las Vegas fundraising event with 70-year-old muscular women in thong bikinis parading around a ballroom, fitness industry giants opening up their pocket books, and tears flowing over wine glasses. After the night was over, a pair of industry moguls presented the very shocked Shannon Shryne with a check for $1,000,949 to a standing ovation. Augie’s Quest had found its voice.
Enter Dr. Steve Perrin of Biogen Laboratories in Cambridge, Massachusetts. According to Augie, if anyone was going to help find a cure for ALS, it was going to be Dr. Perrin. “I want the best to head up our new lab, Steve, and that’s you,” insisted Augie as he and Lynne sat opposite the skeptical doctor. He tried to explain to them that no cure had been found since Lou Gehrig was diagnosed some 60 years earlier. “Nothing can be accomplished without big pharma on board,” Dr. Perrin added. This was music to Augie’s ears. He was able to not only convince Dr. Perrin and his team to head up the ALS Therapy Development Institute (ALS TDI), but to convince big pharma to get on board.
With its star-studded galas, Augie’s Quest has given a seismic boost to ALS research. “We have raised almost $40 million for ALS research,” says Augie. “With Augie’s Quest, we’ve been able to raise awareness and funds, changing the game for the ALS community. We now have the attention of companies like Biogen and Novartis. There is great momentum, and I know we’ll find treatments and a cure in my lifetime.”
Some 40 years ago, Augie was a driven teenager growing up in Anaheim, California. Born Augustine L. Nieto II to Italian and Mexican parents, chubby Augie first spotted Lynne sitting in front of him in class. A year later, Augie and Lynne became high school sweethearts—because nothing would stop him from snagging the girl that took his breath away. But like all great love stories, they faced different forks in the road. Lynne’s dream was an out-of-state full college scholarship. “We were high school sweethearts, but we married our college sweethearts,” says Lynne. “Both of us had two kids, and we have a blended family now. We got back together eighteen years ago.” And the inexpensive opal “Don’t Forget Me” ring that Augie gave Lynne before she left for college is still with her today.
By the time Augie graduated from Claremont College in California, he had raised enough money via a jog-athon to replace some equipment from the college’s weight room that was stolen after he failed to lock a back door one night. He opened a gym with the extra jog-a-thon money, then after a meeting with Ray Wilson, the inventor of the Lifecycle, Augie was convinced that Lifecycles needed to be in gyms around the country. He persuaded his college roommates to help him sell Lifecycles to gyms using money he had raised from parents and friends. When that proved unsuccessful, Augie came up with the idea to offer Lifecycles to gyms and health clubs for free—much to the skepticism of his best friend and partner, Scott, who left with the rest of the team when the gym was declared bankrupt. “The turning point was when I couldn’t sell the over-priced Lifecycles,” said Augie. “So I gave them to the top 50 club owners. That is where I learned the concept of reciprocity! The term means if you give without the expectation of getting anything in return, there is a moral obligation to return the act of kindness.”
That act was the catalyst to Augie becoming cofounder of Life Fitness after he experienced a tsunami of Lifecycle orders. In 1997, at age 39, Augie sold Life Fitness to Brunswick Corporation for $310 million and he retired for a day. At that time, he and his family for 310 million were living in Chicago, but Lynne was homesick for California. One day after her hands began to swell, she feared she had rheumatoid arthritis like her mother. Though it turned out to be an infection from a salt water aquarium, the fear of being vulnerable far from
a support system was especially disconcerting. “I will always be grateful to Augie for agreeing to come back to California, even though it was hard for him to commute” said Lynne. “After he sold Life Fitness to Brunswick, he started to put our family ahead of himself.”
“Without that decision, I would still be running Life Fitness, and I would have not built Augie’s Quest with my family,” reflected Augie, who was finally able to enjoy vacations, concerts, and jogging along the coast with his family in between numerous speaking engagements. “When Augie used to speak to a lot of groups, quite often at the end of his presentation, he’d talk about the ‘Theater of Life,’” said Lynne. “There are only so many seats and there is only one front row, and you need to carefully choose who you allow in your front row.”
It has been eight years since Augie was first diagnosed, and ALS TDI has raised $40 million. “Sean Scott at the lab said, ‘If your house is burning down, don’t run around trying to figure out what caused the fire—just put it out,’” said Lynne. “One of the drugs furthest along at the lab is already approved by the FDA for MS, and the scientists were able to skip the first stage of clinical trials so we’re right at stage two.” That drug is Gilenya, which may one day slow down the progression of MS. Understandably, many patients with ALS want to try the drug themselves, but scientists would rather have ALS patients enroll in clinical trials first.
Another promising road is stem cell research. “But it’s not ready for prime time,” cautions Augie. “They are in the early stages of discovery. I believe that drug development is the key to helping patients today while we wait for stem cell research to advance. Our lab ALS TDI focuses on fast-tracked drug development. And in addition to the two drugs showing promise in slowing the progression of the disease, we have many more in the pipeline.”
This encouraging news for all ALS patients would not have been possible without the vision of the man who invented 41 patents during his tenure with Life Fitness, authored two books using his feet, remains chairman of Octane Fitness, and serves on multiple other boards today. “Augie’s mind at night does what a moth’s does but he actually helps people,” says Lynne. “You can tell when he has so many things to say by his eyes. It takes a little longer but it gets there.” Although everyone who is diagnosed with ALS experiences different symptoms, some may be able to move their legs or their arms—and Augie tries to think of different ways and devices to help them. Some work, like the “bite switch,” which allows patients to use their mouths to move something. “If Augie needs something at night and he doesn’t have his computer or he’s lying down, he can bite down on it and it has a little alarm so the caregivers are alerted,” says Lynne. “It’s a way for him to be safe.”
As long as he has the power of communication, he will continue to help others. It’s also not lost on Augie that he has better care than many others with ALS. He has access to top resources and the means to try solutions that combat the challenges of living with ALS. He is also surrounded by the most inventive minds that produce innovative technologies, such as ways to communicate with your eyes and a computer that uses brain waves. The goal being that if a patient lost the ability of all movement, he or she would still be able to communicate. “When we went to see them for the first time, Augie was like, ‘Who did better, me or Stephen Hawking?’,” Lynne laughs.
Before our meeting, Augie worked out doing leg presses on a special machine adapted by his friends at Hammer Strength and Life Fitness. “I also work out three days a week with a physical therapist at Claremont Club’s Project Walk. I have four caregivers who help me receive nutrition through smoothies made for my feeding tube, and all of these things combined together, help me feel great!” Throughout all this, Augie hasn’t lost his sense of humor. When I told him I was surprised that only the eye and bladder muscles remain active in those with ALS, what appeared on the screen in front of me was “My Willy still works! Do you have a visual?”
Augie smiled and promised to send me his answers to the questions I had sent him the day before. “I do believe that my ALS has stopped. It is a wonderful feeling of no longer being in regression and now in progression. “Austin [his son] is one of my biggest fans. To watch him last night at the Train concert, he was holding and kissing me! There is no better feeling! I also have a deeper love and appreciation for the unconditional love Lynne has shown me. Life is more rewarding when you make the transition from being a player to a coach!”