Confident for an ALS cure

It was 41 months ago today that Augie Nieto was diagnosed with Amyotrophic Lateral Sclerosis, or Lou Gehrig’s disease. His motor functions have been compromised and his family shaken, and his life is often an attempt at finding balance. Nieto said half of those diagnosed with ALS don’t survive past 18 months.

But Nieto, 50, has fought through those months and worked to raise awareness and money to support research about the disease. For Nieto, it is his quest — and that of his wife, Lynne — to champion the cause for the rest of his life, which he intends to have last for a long time.

“It’s a difficult battle — more of a struggle — that our family goes through,” Nieto said. “I believe I am going to live a very long time.”

Nieto, a Corona del Mar resident, recently bought a new boat for his wife. It docks in Vancouver, where the family travels sometimes during the year. It is custom-made for Nieto to move around and enjoy it. For him, it is a symbol.

“What I’m trying to say is, if you were not planning on living long, why would you buy that boat?” Nieto asked. “I want to make plans for the future.”

Nieto is working on the future for others as well. This will be the third year the Nietos will appear on the Jerry Lewis MDA Labor Day Telethon, at 6 p.m. Sunday. They will appear in Muscular Dystrophy Association’s ALS Division. In 2007, the telethon raised $63.8 million with the Nietos’ help.

Spearheading their own initiative, Augie’s Quest, the Nietos have raised $15.6 million since 2005 and have used the money, along with the association, to partner with the ALS Therapy Development Institute in Cambridge, Mass., to begin one the largest research projects on the disease in history.

“I think the impact is that they have raised the level of ALS research to a level we wouldn’t have been able to receive without their efforts,” said Bob Mackle, MDA’s vice president of public information.

“Not just on the money side, either. He has really boosted the level of research, but he has also brought attention to the disease that didn’t have it before. He has given greater hope.”

For Nieto, the goal has always been a simple one: Inspire people, instill enough hope in others with the disease, to keep them alive long enough to find a cure.

Nieto, who owned a fitness club in Chicago before Bally Total Fitness bought it, is still sharp. He is quick to wink at the camera, can recall key aspects of all his and his wife’s plans and is an active participant in many ALS and Muscular Dystrophy Association programs. While he speaks through a microphone to help others understand him, his thoughts are clear.

“It is important for my mental outlook not to be viewed as someone who has no ability to help others,” Nieto said. “My entire life was helping people get fit, and now I have a new passion — helping people have help.”

Lynne, Nieto’s high school sweetheart, and his four children are often looking for balance — treading that line between looking toward the future and spending as much time together in the present.

“The petty things we worried about before go out the door,” Lynne said. “The life we have, we play it out the best we can.”

And the best way for the Nietos, besides the time they spend together, is the time they spend helping others. They have a plan that entails raising $60 million in five years, with Augie’s Quest raising half the amount alone. They have started companies that deal with technologies to help those who lose their motor functions.

Nieto knows that many of those with ALS give up because they choose not to use ventilators or go on living because their lives are so limited.

So Nieto continues with his quest, hoping to inspire others to stay strong, just as he has in order to see the future.

“What I am looking forward to is the day that I no longer have ALS,” Nieto said. “I now believe [the cure] will be in my lifetime.”

For more information on Nieto’s fundraising, go to www.augiesquest.com. For more information on MDA’s role in ALS research, go to www.als-mda.org. For information on technologies to help those with ALS and other diseases, visit www.theaudeo.com.

WHAT IS ALS?

ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease) is a disease that attacks motor neurons. These neurons are nerve cells in the brain and spinal cord that control muscles and voluntary muscle movement.

The cause of ALS is unknown and the disease is usually onset in adulthood. The disease shows itself with generalized weakness and muscle wasting with cramps and muscle twitching. It first affects the legs, arms, and/or throat and mouth muscles, but ultimately affects all voluntary muscles.

The survival rate is usually between three to five years.

DANIEL TEDFORD may be reached at (714) 966-4632 or at daniel.tedford@latimes.com.