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Lou Gehrig's illness; Augie Nieto's cure



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In the three years since he's been afflicted with a horrific disease, Augie Nieto has done more than most people do in a lifetime.

By TOM BERG
THE ORANGE COUNTY REGISTER


CORONA DEL MAR Here's the plan: An elaborate parachute jump with his wife, four children, even his faithful dog, Hazel, wearing goggles.

Fitness guru Augie Nieto then will make a grand entrance into the Beverly Wilshire ballroom, trailing his parachute, for a gala expected to raise $1 million.

Yes, $1 million!

Nieto, of course, will need help – particularly landing since he can't move his arms, legs, hands or neck. He can barely talk; he must be fed through a stomach tube; and soon will need a machine to breathe.

Still, Nieto makes a vow. To the untrained ear, each word sounds like a grunt. But his son, Austin, 22, understands and translates: "Oh, trust me," he says, "if I say I'll do it, I'll do it."

Nieto will meet in a few days with an elite parachute jump team to see if it's possible.

"You'll need to be mummified," says Austin, laughing at the audacity of dad's latest plan. "We'll need to put you in knee braces, hip braces, neck braces, every joint-brace known to man."

Nieto is laughing too. He knows a thing or two about the impossible. As a college kid, he turned an unwanted exercise bike into something that became a $550 million business. Three years ago, when Amyotrophic Lateral Sclerosis, or ALS, began shutting down every muscle in his body, he vowed to find a cure.

If it means throwing his "mummified" body out of an airplane to do so, his philosophy is this: Geronimo!

RISING STAR

The fitness guru started as anything but. As a Loara High School sophomore in Anaheim, he tipped the scales at 260 pounds.

"The girls made fun of me," he says. "I was turned down for dates."

It was his wrestling coach who taught him how to set a goal, a finish line – in this case losing 70 pounds in five months – and reach it.

Augie never forgot the lesson. He kept setting new finish lines. And crossing them.

He built the "Life Cycle" into a series of companies that dominated the exercise industry. Along the way he became one of the fittest men in business, known for skiing, scuba diving and snowmobiling the globe.

"I was all about the physical body," he says "I used to look down people who (didn't) exercise."

That was about to change. In 2004, while waterskiing (in Vietnam's Mekong Delta, no less) the man who once did flips on one ski could no longer hold onto the rope. He saw a doctor.

In March 2005, he was told he had three to five years to live. First, he cried like a baby. Then he denied it. Then he pitied himself.

"I'd go down to the beach and see everyone laughing," he says. "And I'd go, 'Wait. Don't you know I've been diagnosed with ALS?'"

In May that year, he swallowed a bottle of pills and waited to die.

BUSINESS PLAN

Nieto heard voices. Not in his head, but in the hospital room where he lay recovering.

He heard words often reserved until afterwe die: words of unconditional and non-judgmental love by family and friends.

"If they could show that to me after what I did," Nieto says, "then I had an obligation to accept this and make a difference."

Within a month, he stood in the Muscular Dystrophy Association office with a new finish line to cross.

I want to find a cure for ALS, he said.

Good luck,they said. We've been trying for more than 50 years.

Well, Augie (being Augie) had more than a dream. He had a business plan. He offered himself – his life, his face, his reputation and business skills in return for control over how to spend the money he'd help raise.

They shook hands and magic happened: an approach that never had been tried. By a man who was about to surpass Lou Gehrig's influence over a disease called Lou Gehrig's disease.

Nieto hoped to raise $200,000 at his first fundraiser that year. He raised more than $1.1 million – the biggest first-time fundraiser in MDA history. And he was just getting started.

A NEW FINISH LINE

In three years he's raised $15 million. He's written two books. And appeared in the Wall Street Journal, Parade Magazine and on Good Morning America.

He's allowed the world to watch his once-proud body deteriorate.

"I'd say he's had more impact on the disease than anyone," says Sharon Hesterlee, an MDA vice president of research in Tucson, Ariz. "Lou Gehrig put a face to it. Augie's doing something about it."

She means no disrespect to Gehrig – whose name brought recognition to the disease – but to show how ALS research has since languished.

The reason? Some 30,000 Americans have ALS, while 200,000 have Multiple Sclerosis and millions have cancer or heart disease.

"Drug companies don't see a profit margin in it," she says. "Why develop a drug for something you can only sell to about 30,000 people?"

The result is that no one even knows what causes ALS, let alone a cure. Think of the cause as a needle hidden in a haystack of 20,000 genes that make up a human body.

No one could ever test them all before.

Nieto came in and essentially said: I'll raise the money. You look at every single possible cause. Find the cause and we'll find a solution.

And like that, he'd drawn a new finish line.

GEHRIG AND NIETO

It turns out the parachute team won't allow Nieto to jump from a plane. Which seems like a good call, given that Austin must steady his dad's neck while wheeling him over a simple threshold.

Nieto says he can live without arms and legs. Without the ability to swallow food. Without the ability to breathe on his own. As long as he can communicate.

"I am more proud of what I've done in the last 36 months," he says, "than of my 30-year career."

The results of his research probably will not save his life, but may save others. New discoveries have already been made.

Asked if Lou Gehrig's disease might someday be renamed Augie Nieto's disease, he is quick to dismiss the notion.

"It's Lou Gehrig's disease," he says. "It's Augie Nieto's cure."

Contact the writer: 714-796-6979 ortberg@ocregister.com

http://www.ocregister.com/articles/n...6-augie-gehrig