Our Champions
Evan Lamberg
I met Augie and Lynne in 2010. My friend John Ondrosik/Five for Fighting knew my dad had passed away from ALS in 1992, and for that reason alone, he felt I needed to meet Augie.
We met in an Upper West Side of Manhattan restaurant, Augie then using a wheelchair and just beginning to lose his ability to speak. But I understood exactly what he was saying, he had such a similar speech pattern to that of my dad’s. When my father had ALS, for lack of a better word, I had come to know that ALS accent so well.
It’s not hard to fall in love with Augie at hello. He’s a superhero of the most human kind. And so our friendship began.
This included a trip to the ALS Therapy Development Institute, meeting Dr. Steve Perrin and his incredible team of scientists, and many ALS mice. After that tour in Cambridge, I asked Dr. Perrin about the significance of all the data they were collecting and I remember him saying one thing that really struck me: “When we get to ‘X number’ of data points, we’ll cure ALS.”
And today, we’re getting closer and closer to hitting that mark because of Augie’s Quest.
This is a mission very close to my heart, as my family can attest to, having already suffered the brutal onslaught of this disease. My father was a classic ALS patient—two years and out.
Augie, on the other hand, wasn’t going down that easy. He’s managed to pick himself up to a higher level of humanity that I haven’t seen in most healthy people.
All of you know Augie is a complete force of nature—emotionally, intellectually, spiritually, physically and via his wicked sense of humor.
I am humbled and honored to be Augie’s Quest’s awardee, but I’m not here as this year’s ALS Champion. When I gave it some deep thought, that distinction of an ALS Champion belongs to Lynne Nieto and everyone who has cared for someone with ALS.
This includes my mother, who just turned 80 recently. She came up from Florida to celebrate the Tradition of Hope with us, and to see her son, as Jewish mothers do. She truly knows what it means to care for someone you love with ALS.
About a year ago, I hosted a private event and screening of ‘Augie,’ the documentary directed by James Keach and produced by Eric Carlson. As so many of you know, the film documents Augie’s battle with ALS as he searches for a cure using his business acumen.
“But at its heart, it’s a love story whose central characters have a will to live that we should all embrace,” as James Keach said.
At that screening I shared some opening remarks. For the fun of it, I put together a list of some of the greatest couples and greatest love stories of all time: Romeo and Juliet, Humphry Bogart and Lauren Bacall, Mark Antony and Cleopatra, Ronald and Nancy Reagan, John Lennon and Yoko Ono, Coretta Scott King and Dr. Martin Luther King… and even Beauty and the Beast, and of course Kermit the Frog and Miss Piggy.
So tonight, I’m adding Augie and Lynne Nieto to this elite list of the greatest couples and love stories the world will ever see.
As we all know, ALS is known as Lou Gehrig’s disease. So if Lou Gehrig was the pride of the Yankees, then Augie and Lynne are the pride of our hearts and souls.
