by Chris Snow
“My 10-year-old son and 7-year-old daughter will never forget their first NFL game. It was Super Bowl LVI at the NFL’s newest and biggest stadium, the 3.1 million square foot SoFi Stadium in Los Angeles. “This,” my son said that day, “is the coolest sports experience of my life.” And that, really, is what this time in our lives is all about: doing the coolest, most memorable things we can.
Three years ago I was diagnosed with an especially aggressive form of familial ALS. In my family, that meant I had a year to live. We needed a miracle. I feel like I got one in the form of a promising clinical trial. A year and a half ago a friend introduced me to Steve Gleason over text. Steve and I bonded over our shared experiences: ALS and feeding tubes and 10-year-old baseball-loving sons. A few months ago, I told Steve that I was going to do everything I could to get to the Super Bowl. I’d never been, I was sick of Covid winters and I really wanted to see the stadium in LA. I figured I’d go with a friend or two. I didn’t ask Steve for anything,
A few weeks later a team member with Team Gleason Adventures reached out asking how many tickets we would need for our family. I told them there was some confusion and that I was merely sharing my plan with Steve and that kind of generosity was too much. “Steve is stubborn,” I was told. He was insisting that we all go as a family.
When we told the kids, my son was ecstatic. “I’m going to the Super Bowl,” he said aloud over and over and over, as if he needed to convince himself. “What is a Super Bowl?” my daughter asked more than once. She sure found out. And sure loved it. We were allowed onto the field before the game. At game time it was 84 degrees, making it the warmest Super Bowl ever, a wonderful break for us from the winter cold. And we sat with and quickly connected with two other ALS families. As we always say, we wish we were not a part of this exclusive club, but we have met so many good people because of it.
Thank you, Steve, and to your special team members for making us feel like an extension of your own family.”
Team Gleason would also like to extend a heartfelt thank you to Andrew Jo and the NFL for their continued dedication to empowering those living with ALS and for their assistance on our Super Bowl LVI Adventures.