Virgen: ALS patients Gleason and Nieto connect at movie premiere
Cameras flashed for celebrities entering the Regal movie theater at L.A. Live for Thursday night’s premiere of “Gleason.”
But just behind a backdrop placed in front of photographers, a special meeting happened.
Two extraordinary men communicated with their computer devices on their wheelchairs. Steve Gleason, a former New Orleans Saints football player who was diagnosed with amyotrophic lateral sclerosis in 2011, had never met Augie Nieto, a Corona del Mar resident who founded Life Fitness and has been plagued with ALS since 2005.
The two had always wanted to meet. They have been key figures in gaining services and meaningful moments for those with ALS, also known as Lou Gehrig’s disease. They have raised millions of dollars for that and for research toward a cure.
Gleason has Team Gleason; Nieto has Augie’s Quest —both working wonders for those with ALS.
“Hey, Steve,” Nieto typed with the computer interface on his wheelchair. “You have been an inspiration to me. What are we going to do together? We have so many things we can share!”
Gleason likes to call Nieto “the Godfather.”
Nieto also has dealt with the cruel disease with great strength, displaying the true power of the human spirit.
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ALS wipes out movement because it attacks the nerve cells in the brain and spinal cord that control voluntary muscle movement. The life expectancy for ALS patients is two to five years.
During the past 11 years, Nieto has made a phenomenal impact with fundraising and his strong will to bring awareness to ALS. A documentary on his life is set to be released in November.
On Thursday, however, Nieto and his wife, Lynne, enjoyed the documentary about Gleason.
Nieto posted a photo of their meeting on his Facebook page Friday morning.
“Unforgettable moment meeting Steve Gleason at the ‘Gleason’ movie premiere. A powerful film,” he wrote.
The documentary is a bold and truthful account of Gleason’s bout with ALS. The real emotions will draw any generation, as the film relates to family, love and religion.
Gleason began his extensive library of videos, the majority of them journals, when he was diagnosed with ALS. His wife, Michele, a hero in every sense of the word, learned she was pregnant shortly after the diagnosis.
The two wanted to make videos for their baby boy, whom they would name Rivers.
It’s fascinating how what must have been days and months worth of videos was edited to one hour and 50 minutes.
Gleason’s loving personality, along with his expressions of anger, doubt, fear and humor, make the documentary amazingly compelling.
The film was screened at the 2016 Sundance Film Festival. Its official release date is July 29.
Follow me on Twitter: @SteveVirgen
