05/15/2014 12:36 pm ET Updated Dec 06, 2017

They May Call It Lou Gehrig's Disease, but They'll Call It Augie Nieto's Cure

Photo Credit: Steve Cohn

When 47-year-old Augie Nieto learned he had ALS (Lou Gehrig's disease) in March of 2005, he reacted as anyone else might: he went into denial. He became angry. He asked "why me?" and "what did I do to deserve this?" Then, just three months later, he tried to take his own life.

Rewind to that moment just prior to receiving the diagnosis. Up until that pivotal moment, Augie might have defined himself as a loving husband, father to four, and founder of the immensely influential company Life Fitness, pioneers of the indoor cardiovascular revolution. For a man whose life was literally about fitness and staying active, the idea of not being able to move or speak was unfathomable. How do you come to grips with such a thing? How do you find the will to move forward?


Augie didn't just come to grips with his ALS, he began to persevere and overcome. He summoned those same rare qualities that made him an effective and respected leader, and applied them to his new reality. As Augie accepted the hand he'd been dealt, he and his wife Lynne, launched Augie's Quest to fund research and drug development aimed at ending ALS. "It's this work that has kept me motivated and inspired to keep on living," Augie now says.

Today, eight years after his diagnosis, Augie is one of the most driven people you'll ever meet. He remains extremely active as a leader in the fitness industry, and is tireless as a crusader to find a cure for ALS. He's also happier than he's ever been in his life (his words). Augie's zest for living is evident in his eyes and in his smile. It's there when he's pictured with his family (he's now a grandfather); when celebrity musicians are writing songs in his honor, and when he discusses his intent to walk his daughter down the aisle at her wedding this year (yes, walk!!).

Augie is so inspiring not because he lives with ALS, but because his pathway to acceptance was inextricably tied to a need to help others. Help others, help yourself. Thanks for speaking with us Augie and for sharing your wisdom.

May is ALS Awareness month, so I humbly encourage you to share this interview with your networks. Help Augie spread the word!!

1. In just one sentence, what is your purpose in life?

To not only be successful, but BE SIGNIFICANT

2. How has this work changed you?

There is a sense of urgency with the work I'm involved with now. People's lives are at stake, including my own.

3. What do you get from giving?

I believe in reciprocity... giving without the expectation of receiving anything in return. When you do this, you get more than one could ever imagine. Lynne and I are inundated with emails and Facebook messages from people who have been inspired by our story. These stories keep us motivated to keep giving, and keep asking others to give.

4. Who is a living hero and what would you ask them if given the chance?

I have a lot of heroes... everyone who generously donates to my Quest year after year. I'd like to sit down with all of them and really find out more about what motivates them to continue giving!

5. What everyday resources could help you achieve your philanthropic goals?

Anyone that knows me, knows that I set really big goals! ALS is an under-funded disease so I guess the main thing I would want is more awareness. This interview and others are a great start!

6. What is a burning question that you have for this community?

What makes you give and keep giving?

7. What would the title of your book be?

Well, I've already written two: Augie's Quest and Reciprocity. I hope the third book is called Augie's Cure. A good friend of ours (and the current president of Life Fitness, Chris Clawson) once said, "They may call it Lou Gehrig's Disease, but they'll call it Augie Nieto's Cure." I hope to make that come true!

8. Tell us something you rarely share in public.

ALS affects voluntary muscles... my willy still works!

9. What advice do you have for others who aspire to be citizen philanthropists?

Give without the expectation of receiving anything in return. Do your homework and make sure the money or time you are spending is being used efficiently.

10. What question do you wish I had asked, and what is the answer?

QUESTION: What is the difference between being successful and being significant? ANSWER: Before I was diagnosed with ALS, I had success. It wasn't until after my diagnosis that I became significant. Being significant has more to do with being worthy of the attention and importance placed on your success. You have to ask yourself, "what will I be remembered for?" If you're successful, you might not be missed. If you're significant, you will be missed.

LINKS: Augie's Quest (Facebook, Twitter, Instagram, YouTube)

VIDEOS: Today Show segment