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Thursday, Jun 20, 2024

Fitness Mogul Augie Nieto’s Fight Against ALS Lives On

Most people with amyotrophic lateral sclerosis (ALS) don’t survive three years past their diagnosis, but most people aren’t Augie Nieto.

Nieto lived with ALS, a muscle-wasting condition commonly known as Lou Gehrig’s disease, for 18 years after his diagnosis. The Orange County native and his wife, Lynne, spent about $250,000 a year on the care and technology he needed to survive and communicate once he lost his ability to speak. They covered his costly care with the fortune he amassed through revolutionizing the fitness industry with his company, Life Fitness.

Following his diagnosis, Nieto dedicated the remainder of his life to ALS research. His nonprofit, Augie’s Quest to Cure ALS—founded by him and Lynne—has raised nearly $200 million for research aiming to determine the cure, causes and treatments for the fatal disease.

Nieto died a week after his 65th birthday on Feb. 22, surrounded by family and loved ones at the University of California, Irvine Medical Center in Orange. He is survived by his wife, four children and eight grandchildren.

Watermelon Diet

Nieto, born in 1958, grew up in a working-class Mexican-Italian family in Anaheim. His father, Augustine, supported the household by working as a field foreman for Shell Oil.

Nieto lost his mother, Adele, at a young age. She hanged herself in his bedroom after years of struggling to cope with the death of his older brother, Bobby, who died from leukemia before Nieto was born.

Nieto also had struggles of his own. At age 15, he weighed 260 pounds, at 5’6”. He developed body image issues due to his weight, which proved an easy target for high school bullies.

Nieto began his physical transformation by running daily. He paired his new regimen with an eight-month diet of only watermelon, which gave him two root canals and six fillings. By the next school year, he had lost over 100 pounds.

His classmate, Lynne, took notice, marking the beginning of their high school relationship. While they dated, Nieto visited Lynne on Saturdays to wash her new Camaro after his morning shifts as a truck-washer for his neighbor’s company.

“I think it was just an excuse to come over,” Lynne told the Business Journal.

The couple amicably parted ways before attending their respective universities, with Lynne headed for UCI and Nieto to Claremont McKenna College, then known as Claremont Men’s College.

North American Stag Fitness

Nieto played center for Claremont’s football team, the Stags. While he was full of school spirit, education was hardly his passion—he longed to be in business.
Nieto’s first business venture sprung from a low C he received on a paper outlining a plan for a health club.

Determined to prove his professor wrong, he secured investors and used the funds to buy equipment and rent a space for a gym near campus. He ran the gym while still in school and alternated days by gender, since it only had one locker room, but found that attendance from women was sparse.

“Since it seemed foolish to ignore half the potential market, I started casting around for something that might appeal to women,” Nieto wrote in his book, “Reciprocity, Incorporated.”

Nieto then spotted the Lifecycle—a computerized stationary bike—that was popular among women gym-goers in a San Diego club owned by Ray Wilson. He secured a distribution partnership with Wilson, who owned the North American rights to the bike, and tried selling the Lifecycle to clubs so they could increase membership among women.

The machine, however, was a hard sell. It cost gyms about $3,000 per unit, while competing bikes went for around $600.

Nieto bought about 300 Lifecycles for the distribution company he started, North American Stag Fitness, but only sold 11 bikes after nine months of touring health clubs across the U.S.

He tried a new strategy, giving away 50 Lifecycles to fitness club owners to try in their homes. Orders for more bikes poured in, as club owners added them to their gyms. The machines soon became a hit among gym-goers, prompting Nieto to start a rent-to-own program for fitness clubs.

As demand surged, Nieto and Wilson in 1977 founded their own company named after their flagship product: Lifecycle Inc.

First Marriage

While Lifecycle grew, Nieto neglected the family he worked to support.
He married his first wife, Karin Fitzpatrick, in 1984. They had two children—Austin, born in 1986, and Lindsay in 1989.

A year after Nieto’s first marriage, Bally Manufacturing, now named Bally Technologies, bought Lifecycle for $10 million, later renaming the company to Life Fitness.

Nieto remained consumed in his business at the expense of his home life, starting his workdays at 6 a.m. and ending them at around midnight.

One evening, in 1992, Nieto came home to a suitcase packed with his belongings and Fitzpatrick telling him to leave.

“I thought I’d be asked back,” Nieto told author T.R. Pearson in his biography, “Augie’s Quest.”

“Nineteen months later, I caught on.”

Involved Leader

Nieto’s divorce led him to set firm work boundaries so he could spend more time with his children.

Still, he remained an involved leader at work.

Nieto made it a point to connect with his employees. He’d walk down to the factory floor to talk to workers, to the service department to listen to phone calls, and to marketing to stay up to date on campaigns.

“If you talk to anybody that worked at Life Fitness under Augie, virtually everyone had a personal story they could tell you about him,” Mike Zinda, one of Nieto’s earliest sales reps, told the Business Journal.

Marriage to Lynne

Nieto stayed in contact with his high school sweetheart, Lynne, after their breakup. The two would have lunch about once a year even after he moved to Chicago for Life Fitness.

Lynne made Nieto one of her bridesmaids at her first wedding in Newport Harbor. At the end of the night, Lynne and her first husband boarded a skiff for a private, newlywed sail. But to her surprise, Nieto accompanied them on the boat.

“I look up and see my mom, and she’s got this scowl on her face,” Lynne said. “I look over, and Augie’s in the boat with me and my ex-husband. So, the three of us went off,” she added with a laugh.

Shortly after their respective divorces, Lynne and Nieto exchanged vows in 1995 in the backyard of their friend’s home in Irvine. The intimate ceremony, hosted by Renee and Tony Russell—Nieto’s personal and corporate attorney—comprised of about 25 guests.

“It doesn’t look good on paper at all,” Lynne said. “We were married six months after my divorce was final.”

Brunswick Sale

Lynne and her two children from her previous marriage, Nicole and Danielle, joined Nieto in Chicago shortly after they were married.

Nieto’s company expanded its portfolio to over 200 products, including climbers and treadmills, and grew to generate annual sales of around $180 million.

He purchased Life Fitness back in 1991 from Bally for $63 million, after partnering with private equity firm Mancuso & Co.

Eight years later, in 1997, Nieto sold the company to Brunswick Corp. (NYSE: BC) for $310 million. He stepped down as CEO shortly after.

Health Nut

While he ran Life Fitness, Nieto’s colleagues knew him to be an “eating machine.”
“He would come into offices and rummage through your desk for food,” Chris Clawson, Nieto’s VP at the time, told the Business Journal.

He once caught Nieto in his office with a trail of wrappers from the protein bars, peanuts and raisins Clawson stashed in his desk.

“He cleaned out what I had left in there. I was like, ‘what the hell? That’s my frickin’ food,’” Clawson said.

Nieto tossed him a $20 bill and replied, “Go replenish the stock.”

Nieto’s massive appetite complemented his intense workout regimen. He ran marathons with Russell and did weight training to maintain his brawny physique.

“I always lifted one half of whatever Augie lifted,” Russell said with a laugh.

ALS Diagnosis

Having been so health-conscious for much of his life, Nieto’s diagnosis with a disease that would rob him of his active lifestyle came as a shock.

About 30,000 people in the U.S. suffer from ALS, including 5,000 new cases diagnosed annually. Worldwide, around 600,000 people have the disease.

ALS—a progressive, neurodegenerative disorder—affects nerve cells in the brain and spinal cord, causing muscle weakness that leads to paralysis. Its symptoms include the loss of ability to speak, swallow, walk, grasp objects or breathe independently.

Most people with ALS die from respiratory failure, typically within three to five years after the onset of symptoms. There is no known cure for the disease, nor any effective treatment that could reverse its progression.

Nieto received his diagnosis in 2005.

Devastated by the news, he almost succumbed to the same fate as his mother. He swallowed a fistful of antidepressants on an early morning two months after his diagnosis. The next day, he woke up in the hospital.

Nieto’s suicide attempt angered his then-19-year-old son, Austin, who thought his father “took the easy way out,­” he said in the biography. Lynne, however, was more empathetic.

“Here’s this incredibly fit, king-of-the-world kind of a guy who was told that he’s going to die in three years because he’s not going to be able to move,” Lynne said. “I told him that if he wanted to die, I understood it.”

When Nieto awoke, “he was incredibly apologetic,” Lynne recalled.

“After that, I think he just wanted to live.”

Augie’s Quest

Nieto co-founded Augie’s Quest with Lynne and President Shannon Shryne the year he was diagnosed.

He started the nonprofit after finding ALS research to be underfunded and misguided.

“Universities typically study what causes the disease,” Augie’s Quest VP Gretchen Simoneaux told the Business Journal. “Augie felt if your house was burning down, you wouldn’t run around looking to see what caused the fire, you would just put it out. He wanted to fund research that put out the fire.”

For many of his loved ones, Nieto’s second life mission seemed greater than his first.
“Augie changed the fitness industry, but this is different,” Lynne said. “Neither one of us ever committed ourselves into thinking that we were going to find something in time for Augie.”

Augie’s Quest, she added, “is for people other than himself.”

Competitor Support

When Nieto’s colleagues and competitors in the fitness industry learned of Augie’s Quest, they mobilized in support.

Donations poured in, including from former Precor Inc. CEOs Paul Byrne and Rob Barker.
“We had a huge lawsuit with Precor in the ’90s that cost Life Fitness millions of dollars,” Clawson said.

When it came to fundraising for Nieto, Byrne and Barker didn’t hesitate to contribute.
Byrne, who ran Precor at the time, donated fitness equipment for a silent auction hosted by Augie’s Quest in 2006.

His support helped the nonprofit raise $5.6 million in its first year, exceeding Nieto’s goal of $5 million.

Bocce Ball

Nieto relived the reality of his ALS diagnosis whenever he revealed it family and friends.
In a tearful meeting at the California Coast Gold Chapter of the Young Presidents’ Organization (YPO), Nieto insisted that his fellow members refrain from giving him any special treatment.

“It was a directive that only Augie could give,” Jeff Moorad, YPO member and former CEO of the Arizona Diamondbacks and San Diego Padres, told the Business Journal. “We all followed him, to a tee.”

Nieto’s YPO friends would playfully tell him to hurry up whenever he struggled to walk or type, after he could only communicate by controlling a trackball that selected letters from a computer screen on his wheelchair.

“That’s the way he wanted us to treat him and we did it to the end,” Moorad said.
While Nieto’s diagnosis strengthened his existing YPO friendships, it also made him new ones.

Pat Fuscoe, another YPO member and executive chairman of Irvine-based Fuscoe Engineering, initially kept his distance from Nieto.

“He was intimidating,” Fuscoe told the Business Journal, adding that, before his diagnosis, Nieto drove a yellow Ferrari convertible “with the top down all the time, even in freezing cold rain.”

Fuscoe and Nieto eventually grew close, often spending time on Nieto’s boat.

One afternoon, when his boat was anchored in White’s Landing on Catalina Island, Nieto told Fuscoe he wanted to swim to shore.

Fuscoe layered three life jackets on Nieto, who could still walk at the time but was losing the ability to fully control his arms.

They made it to the beach, and Nieto suggested they play a game of bocce ball.

“I’m thinking, ‘well s***, this isn’t fair,’” Fuscoe said.

Nieto told him, “Pat, whatever you do, don’t let me win.”

Nieto threw the ball using his shoulders to swing his arms like a pendulum. His tosses landed closest to the jack.

Fuscoe watched in disbelief. “He beat me. He’s a jerk.”

Fuscoe shared his crushing defeat during his acceptance speech for the Founder’s Award at the 2016 annual fundraising Tradition of Hope Gala for Augie’s Quest.

“I said then that it was my goal to get Augie cured, so I can avenge my loss,” Fuscoe recalled with a laugh.

Board Work

Nieto continued to serve on the boards of several companies, even after ALS confined him to a wheelchair.

His board work included Octane Fitness, Curves, Jenny Craig, Fuscoe Engineering and Quest Software, where he was part of a special board committee overseeing the sale of the Aliso Viejo-based company. Then-CEO Vinny Smith lost out in the 2012 bidding process to Dell, which acquired Quest for $2.4 billion, a sign of the sale’s integrity.

Nieto also returned to Life Fitness’ board in 2019 at Clawson’s insistence.

“Part of my condition [to come back to the company and run it as CEO] was that Augie be on the board, which they agreed,” Clawson said.

Health Complications

By 2016, Nieto joined the 10% of people with ALS to survive over a decade after their first symptoms.

He lived to witness family milestones he initially thought he would miss, including the marriages of three of his children and the birth of eight grandchildren.

Last June, however, Nieto faced several complications that jeopardized his health.
He considered pulling the plug a few months later, though his family and friends talked him out of it.

However, last month Nieto decided it was time.

“He chose to have his ventilator removed,” Lynne said. “He told me that he was done living and that he had fought long and hard.”

The Quest Continues

Although Augie’s Quest lost its founder, Nieto’s fight to cure ALS charges forward.

Recent research supported by Augie’s Quest has given many living with ALS a new hope.
Irvine-based Eledon Pharmaceuticals Inc. (Nasdaq: ELDN) last year revealed “positive topline results” from a Phase 2a trial for Tegoprubart, a drug which demonstrated safety, target engagement and biomarker responses in patients living with ALS.

The study enrolled 54 adults with the disease at 13 treatment sites in the U.S. and Canada. Nieto wasn’t part of the study, though his nonprofit funded the invention of the drug at the ALS Therapy Development Institute, which was founded by James Heywood in 1999 after his younger brother Stephen was diagnosed with ALS.

“I’m no Augie, but I hope I can lead this going forward,” Lynne said. “We have a responsibility to continue this work.”

“Most people that were in our situation weren’t as lucky as we were,” she added.
Nieto shared a similar sentiment in his farewell note to loved ones.

“I have a lot to be thankful for,” he wrote. “[I] was able to enjoy those close to me longer than so many friends with ALS.

“Please keep me in your hearts … Please help Lynne carry on the mission. Because I will be in your heart, I will get to experience the joy when we discover a cure.”

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