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Lynne Nieto: Augie's Partner in Life, Love and ALS

While Augie Nieto is the face of ALS, his wife Lynne Nieto has become the voice of ALS. (Photo courtesy Augie's Quest.)

To successfully raise money for a cause, the cause often needs a face. For amyotrophic lateral sclerosis (ALS), that face is Augie Nieto. Augie, co-founder of Life Fitness and chairman of Octane Fitness, Augie's Quest and ALS Therapy Development Institute, was diagnosed with ALS in 2005 at the age of 47.

But every cause also needs a voice. Augie was the voice of ALS until ALS took his voice. Now, ALS's voice is Lynne Nieto, Augie's wife.

Lynne has been called upon to speak at many fundraising events for Augie's Quest, an organization that the Nietos created in 2005 to raise money for ALS research. It is now the fundraising arm of the ALS Therapy Development Institute.

"Augie used to script me on the way to an event because he could stand up and—he still can in his head—do a full hour-long speech without any preparation or anything," Lynne said. "We would literally be driving to this event and Augie is like, 'I want to you to say the following.' It was disastrous, so now Augie doesn't ask me to do that."

Instead, Lynne thinks about what she wants to say for "a long time," she said, and then right before the event starts, she prepares.

"Then when I am up there, I never get out what I had planned to say or I will start rambling," she said. "If Augie gets emotional, then I get frazzled."

Augie said: "It is so much better when she speaks from the heart. I am proud of Lynne."

Lynne's personality is the opposite of Augie's personality, said Shannon Shryne, vice president of development for the ALS Therapy Development Institute. While Augie loves attention, Lynne is not as comfortable with it.

"She does it because it makes Augie happy," Shryne said. "She is very good at it, but she still gets really nervous. She would prefer to be in the background."

Shryne said she has watched as Lynne has grown into her role as Augie's voice.

"Lynne and Augie are such a good team," Shryne said. "They have such respect for each other and such love. I don’t want to say it's rare, and hopefully, it's not, but I don’t see couples like that very often…Lynne is probably the strongest person I know. And she is a huge part as to why Augie's Quest has been so successful."

Augie and Lynne were high school sweethearts, parting ways to go to college, only to reconnect years later and marry. (Photo from Bash for Augie's Quest program.)

Lynne and Augie were married for just 10 years when Augie was diagnosed. They had been high school sweethearts until they went their separate ways for college. Both married other people but reconnected after divorces.

During their time apart, Lynne had a career of her own. She graduated with an accounting degree and joined her family's real estate development and management firm where she mostly worked with single family home developments. She worked her way into the role of president of the company's property management division before leaving the business in 2000.

She uses her business skills as a member of the board for the ALS Therapy Development Institute, and she is engaged with the decisions made there, Shryne said.

"She is a catalyst for making things better," Shryne said.

Still, that business experience doesn't make public speaking any easier.

"I don't think she ever thought in a thousand years that she would be talking on a stage in front of a thousand people or running around the country to try to raise money for Augie's Quest," said Peter Brown, president of Athletic Business Media and a longtime friend of Augie's. "It's been amazing how she's been up to the task."

Pat Regan, vice president of purchasing for Life Time Fitness and a former distributor for Life Fitness, said that Lynne deserves a lot of credit for the success of Augie's Quest.

"Lynne has been such a beautiful extension of Augie and his passion and drive," Regan said. "Lynne is really such an inspiration to me. She knows exactly what Augie would do and would react on his behalf. She delivers for him and for [Augie's Quest] tirelessly."

Lynne is the one who executes the ideas that the two come up with, Regan said.

"Much lesser people couldn’t do that," Regan said. "There is no question that Augie married his equal." 

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