Augie’s Quest: The Journey from Success to Significance

One man’s fight to find a cure for Lou Gehrig’s disease.

Originally featured in U.S. News & World Report

Helen Keller once noted that, “Life is either a daring adventure or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable.” She should know. She was the first deaf and blind person to earn a bachelor of arts degree, and followed that accomplishment with a distinguished career as a renowned author, lecturer and political activist. As a physician, I’ve often marveled at the extraordinary courage, audacity and fearlessness exhibited by people like Keller, who, when confronted with severe and often life-threatening adversity, push through their own despair and instead use their difficult challenge to help others.

Which brings me to the remarkable story of my good friend Augie Nieto.

As the founder of Life Fitness, one of the world’s leading makers of exercise equipment for the gym, Augie quickly rose to the rank of an international fitness industry icon. An overweight teen, he headed to gyms to seek help shedding the weight and getting fit. Instead of salvation, he was disappointed to find subpar cardio and weight apparatuses. He saw this equipment dilemma as a call to arms that led him to work tirelessly and successfully as he founded Life Fitness. This steadfast determination has served him well.

Augie Nieto, founder of Life Fitness, before his diagnosis.

After selling the company, Augie moved on to become an industry expert, including joining me as an operating advisor to North Castle Partners, a private equity firm focused on companies working within the healthy, active and sustainable living sectors. Teaming on projects, Augie and I developed a unique bond and rhythm. We were, first and foremost, gym rats. On business trips, we’d meet in the hotel lobby after awakening at the crack of dawn, head out to a local gym, sweat through some high-intensity cardio, lift weights and end our early morning ritual by grabbing coffee to go while racing to get ready for our meetings.

And then, in 2005, Augie reached out to me with troubling news. He’d been experiencing a puzzling loss of strength and muscle twitching, which was being assessed by his medical team. As we awaited the results of his evaluation, my medical mind ruminated about the differential diagnosis, concluding none of it was good. Days later, at the age of 46, Augie was diagnosed with amyotrophic lateral sclerosis, or ALS, a neurodegenerative condition also known as Lou Gehrig’s disease. There are, on average, 15 people diagnosed with ALS every day, and roughly 30,000 people in America have this condition. ALS symptoms include the progressive loss of control of limbs, speech and the ability to breathe. Some 50 percent of patients live at least two years after diagnosis; 20 percent live five years or more and up to 10 percent survive more than 10 years. Scientists have identified over 100 genetic permutations affecting ALS and neurodegenerative diseases. Treatment options for Augie were slim and none.

During the ensuing months after his diagnosis, friends and family witnessed Augie’s firestorm of emotions, from numbing shock and hopeless anguish, to a fierce focus and tenacity, the same attributes that shaped his professional career as a brilliant, successful business man. “Your first reaction is denial, then anger,” he told The Wall Street Journal in 2006. “Then you get ready to fight.”

Augie Nieto with wife Lynne, 11 years after his ALS diagnosis.

With assistance from a team of friends, researchers and medical experts, Augie came to acknowledge the bleak reality that ALS was not the subject of widespread research into treatment and cures, and that expeditious avenues to accomplish these goals were nonexistent. For a period of time and to raise awareness, Augie and his wife Lynne partnered with the Muscular Dystrophy Association, which provides research, medical services and education for more than 40 neuromuscular diseases, including ALS. A year after his diagnosis, he appeared on the cover of Parade magazine, becoming the face of ALS activism. And at the same time, he befriended Today Show anchor Natalie Morales, to whom he once shared, “You can either celebrate what you can do, or mourn what you can’t.” Or, as he told me later, “Every day I wake up and create a new normal. I don’t dwell on which fingers no longer work, but instead, I focus on keeping the ones that do still function busy achieving my goals.” I never forgot that and frequently use it to inspire others.

Augie at daughter Lindsay’s 2014 wedding.

Augie wanted to achieve much more than raise money. He wanted treatment options, and even a cure. Frustrated but not fazed by both the slow pace and the paucity of ALS research in general, he and his family created Augie’s Quest, an international fundraising foundation, which, through its events and partnerships during the past 10 years, has raised more than $44 million, making it the largest individual fundraising program for ALS in the world. This money now funds a fast track of cutting edge ALS research by ALS Therapy Development Institute (ALS TDI) in Cambridge, Massachusetts, for which Augie now serves as chairman of the board. As a result, there are now two new and promising drugs progressing to human trials. He’s also commandeering the first precision medicine program geared to ALS. In essence, the system can monitor the muscular changes taking place in an individual by using advanced movement technology similar to that which is used in the fitness industry. This, then, is combined with the person’s unique genome and stem cells as a more tailored treatment plan is created. To date, researchers have enrolled 250 people from six countries in this precision program and results appear promising. Augie and his team are persistent in their pursuit of treatments to halt, reverse and cure this lethal disease.

Despite the relentless progression of his disease, Augie managed to write his first book, “Augie’s Quest: One Man’s Journey from Success to Significance,” with Mitch Albom (author of “Tuesdays with Morrie”) penning the forward. Augie’s written words lay bare the traumatic trajectory of his personal journey, from the dark days of desperation to assertive resolve. From these pages, I’ve mined a few jewels of wisdom to share.

1. A critical survival skill is the ability to regroup. When Augie was diagnosed with ALS, the shock of this paralyzing mental and physical blow knocked him into a nightmarish abyss of despair. Eventually summoning the tremendous reserve of tenacity and fortitude that has driven his success, Augie did rise up, demonstrating his own “undefeatable strength.” He went on to create a “new normal” life plan, fueled by a burning desire to confront the disease with every resource he could find. He drew upon his well-honed business skills and resources to establish Augie’s Quest, firing up the science community to fast-track promising treatment trials. His life is forever changed. By deftly adapting and adjusting to that new harsh and often harrowing reality, Augie continues to open doors of opportunity and hope to himself and others. Each of us can expect to be kicked to the ground countless times throughout our lifetimes. The key to survival success is learning from each experience, getting up as soon as possible and pushing on with our life’s work.
2. Success is fine, but significance is priceless. As founder of Life Fitness, Augie achieved remarkable success and reaped many material benefits from his accomplishments. The ALS diagnosis sent him on another path, one not built on monetary or professional success. This is one that is forged with a powerful drive to leave a meaningful legacy and make a significant, life-saving difference in people’s lives. His transformation from fitness industry pioneer to ALS spokesman, leader and activist, is now Augie’s daring life adventure. Chris Clawson, Life Fitness’s current president, noted,​ “They may call it Lou Gehrig’s disease, but it will be called Augie Nieto’s cure.”
3.  Passionate personal goals fuel extraordinary achievements. As a physician, I’ve witnessed astonishing mental and physical feats made possible simply by the abject will of that individual to achieve a deeply meaningful goal. Augie is no exception. In addition to his advocacy work on behalf of ALS, Augie aspired to walk his beautiful daughter Lindsay down the aisle at her July 2014 wedding. Where others saw impossibility, Augie envisioned possibilities. He partnered with the team at Project Walk, a neuromuscular recovery center, and spent hours performing workouts to achieve greater muscular performance. And on that wedding day, using a “Tram” device to maneuver down the aisle, Augie, assisted by his physical therapist, stood by Lindsay’s side. Although he could not speak, he mouthed “I love you, and I’m so proud of you.” Mission accomplished. Never underestimate the potent power of an unflinching will.
4. Keep doing what you love. The tragic irony of Augie’s medical condition escapes no one. Here you have a fit, athletic fitness leader, whose company, Life Fitness, is dedicated to building exercise equipment, the sole purpose of which is to build and maintain excellent muscle strength and performance. Then that very leader is diagnosed with a disease that robs him of his muscular strength and the use of his body, leaving only his mind and spirit unscathed. But being confined to a wheelchairnever stopped his inexorable drive to work and achieve. So, it’s no surprise that an integral part of Augie’s regrouping process was to pair his ALS activism with the superb talent he has for business. Grabbing the reins of the Octane Fitness company, he became its chair and recently shepherded its very successful sale to Nautilus. Despite all, you just have to keep doing what you love.
5. Become a “chief inspirational officer.” Known as the Chief Inspirational Officer of ALS TDI, Augie inspires others through his compassion, empathy and stubborn drive to achieve research and treatment milestones. His energy and enthusiasm permeates the Augie’s Quest events, blogs and media platforms. He’s transparent and blunt in response​​to the question of what’s his biggest motivation: “It sounds cliche, but it really is to end this damn disease. I’ve gotten to see my kids get married and have babies and I’m grateful for that. But there are so many people who are diagnosed with ALS that don’t get to see these milestones or watch their children grow. It really is the worst diagnosis on the planet and my entire Being​ is motivated with everything I have to make sure that one day families don’t have to endure ALS.” Each of us has a golden opportunity to become our own best chief inspirational officer. Believe it and you’ll touch lives.

All of us have the potential to regroup and discover undefeatable strength in the presence of extreme adversity. Camus got it right when he noted:  “In the midst of winter, I found there was, within me, an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.”

As I walked into the gym this morning, I felt comforted by Augie’s ever-present spirit, encouraging me to keep pushing way outside of my comfort zone, and to discover my own invincible summer.