Augie Nieto listens to the words of Southern California rock band The Calling on a stormy day in Corona del Mar.
One by one, we stand beneath the sun<br>With arms high, open wide<br>Two by two, he’s getting you to watch him <br>As he leaves this life he knew
Lynne Nieto, his high school sweetheart and wife of 16 years, has some other words to offer a stranger who’s dropped by to ask a lot of personal questions: She and Augie have never been happier.
And why not be happy? She’s sitting in a dream home, elegant and cozy all at once, with the Pacific Ocean a glimpse away through floor-to-ceiling windows. Family photos—including one with the Dalai Lama—blend with modern paintings, oriental vases and other chic design accents. It would be no surprise if she were chatting with a correspondent from Architecture Digest.
A beautiful bronze of a muscled striver offers a poignant clue that the visitor is here about something else. It’s an artwork that’s been pressed into marketing duty, with its top adorned by one of those big foam gloves with the index finger extended in a “We’re No. 1” salute.
The bronze is called Man on a Rope.
The big foam finger promotes Augie’s Quest.
Augie sits in a wheelchair a few feet away. It’s his house within this home. Amyotrophic lateral sclerosis has confined him there.
Who could be happy about that?
How much anger is set aside<br>As each one of us cries
Ask about the recent progress that Augie’s Quest has made in taking the fight to ALS and he’ll give you a report fit for a board room.
The foundation has raised more than $33 million for research at its ALS Therapy Development Institute in Cambridge, Mass. He and Lynne co-chair Augie’s Quest, which is part of the Muscular Dystrophy Association. Augie is chair of the research institute in Cambridge.
“All of our hard work is now coming to fruition with drug development,” Augie reports. “Just in the past four months we have finalized an agreement with a major pharmaceutical company, and we’re working on additional deals. Hopefully, we’ll be able to get two drugs into phase 2 clinical trials this year. We have 30 other drugs in the pipeline.”
Augie zeroes in on what that means in business terms. The institute holds stakes of anywhere from 20% to 50% in the drugs under development, which points to the potential for eventual milestone payments and royalties that would put the foundation and research on a self-funded footing.
He gives the accounting like the chief executive officer who built exercise bicycle maker Life Fitness, now part of Lake Forest, Ill.-based Brunswick Corp., and eventually sold his stake in a $310 million deal. He still carries a bit of the chubby teenager who decided to change his life with exercise, remaining in the fitness game as chairman of Minnesota-based Octane Fitness, which designs and distributes elliptical trainers.
Red light, they come and<br>They take him away<br>In the thoughts, he’ll be<br>Better, some day
The recent progress prompts a different report from Lynne.
The public turn her family’s life has taken doesn’t come naturally to her. She has nevertheless been fully in the fight from the start, when Augie was diagnosed with ALS seven years ago.
Most ALS patients live between three and five years after diagnosis. In 2010, in Augie’s fifth year with the disease, Lynne went through a cycle of dreadful reckoning—probably the last New Year’s with Augie, probably his last birthday … and on through the desolate calendar of her mind’s eye. Then came the breakthroughs on the developments of the two lead drugs from the ALS Therapy Development Institute.
“There’s momentum now—there’s reason to have hope,” Lynne says. “I had to go through a mindset change.”
That doesn’t mean that she’s on cheery autopilot.
“In the last three weeks, we’ve lost seven friends to ALS,” she says.
Such losses are constant reminders of the battle she and Augie have engaged.
They make a formidable tag team—Augie with his competitive drive and business-like focus, and Lynne with the courage to consider difficult circumstances and the ability to see hope when it shows up.
They aim to wrestle ALS to the ground, and their complementary strengths give the clear impression that it’s more than hyperbole when Lynne says that ALS “might be called Lou Gehrig’s Disease, but it will be called Augie Nieto’s Cure.”
So, who’s the man, with the plan,<br>Eating up all that he can?
It’s not hyperbole, either, to compare Augie with the man for whom the disease is named. Gehrig went by the nickname “The Iron Horse” for the durability that led him to play in 2,130 consecutive games with the New York Yankees, a streak cut short only after ALS struck him at the age of 38.
Augie’s got some iron in him, too. Everything he said for this story was communicated thanks to modern technology and his toes, about the only part of his body he can move anymore.
He uses his toes to work a software program that allows him to select letters and phrases. It’s connected to a device that can convert what he writes to audio.
Augie is quick to say that he can do 40 words a minute. He’s just as quick to credit others, including “software guru” Troy Jurgensen, the designer of the TypeRight software program.
The company that produces the device that converts his emails to audio is Pittsburgh-based Dynavox Inc., which counts Augie as a director. It’s the largest provider of such devices for individuals who have lost their ability to communicate any other way.
“I send emails, communicate verbally through the computer, and control my environment all with a computer,” Augie says. “I’m able to control the temperature in the room, listen to my iTunes library of music, watch TV, send emails, attend conference calls, etc., all independently. I use Web Ex to host conference calls with employees, boards, associates, etc. It gives me a way to communicate in real time which is important to me. Without the ability to communicate, I would be lost!”
So would a lot of others.
“We provide a way for families to communicate,” Augie says of Dynavox.
Tied tight, can’t see out<br>Your eyes<br>That he’s sure to shine,<br>Sure to shine
Augie has another link to software as a director of Aliso Viejo-based Quest Software Inc., where he’s on a special committee overseeing an effort to take the company private under a deal valued at about $2 billion.
Then there’s his role as senior adviser to private equity firm North Castle Partners in Greenwhich, Conn., and service as national vice president of MDA and co-chair of its ALS division.
He’s an executive through and through, tapping into advice on best practices, laying out plans, forging partnerships, taking charge.
He and Lynne traveled around the country after his diagnosis, meeting with various organizations. They thought about starting a foundation from scratch, but decided to partner with MDA on the advice of Quest Software Chief Executive Vinny Smith, who suggested the notion of getting involved with an established organization.
Lynne and Augie signed a contract with the MDA that allows them to direct how they want the money spent, “with 100% of net proceeds going to research with no overhead, and guarantees that any relationships of ours would be kept for Augie’s Quest in perpetuity,” he says. “It was the best decision we made—I can’t imagine raising this kind of money without the support of the MDA staff and resources.”
Do you ever think that things<br>Are meant to be?<br>I know we all have<br>Our reasons why
The fitness industry has rallied behind Augie’s Quest. The International Health Racquet & Sports Club Association makes the foundation’s annual fundraiser—called BASH—part of their largest annual tradeshow. This year’s event was held last month and raised more than $1.6 million.
The trade group also has brought connections to equipment suppliers and fitness clubs, whose members have pitched more than $17 million.
“All of the major players have been supportive: LA Fitness, Life Fitness, Bally Total Fitness, Zumba, 24 Hour Fitness, etc.,” Augie reports. “It’s ironic that, with my background, I’ve been diagnosed with a disease that takes away your muscle and ability to move. Many of these companies have jumped on board to help us spread awareness.”
The Orange County business community also has taken on the challenge.
“I’m a part of Young President’s Organization,” Augie says. “Lynne and I continue to be humbled by the support we have received from friends that we have met through YPO, and strangers who we have never met. It’s unbelievable to me how our story has reached the Orange County community and beyond.”
And now the power<br>Of one human being<br>Has gone and changed<br>So many lives
Visit augiesquest.org for more information.
