‘Gleason’ takes in-depth look at ALS
January 19, 2016
On Sept. 25, 2006, Steve Gleason delivered one of the defining moments in New Orleans Saints history when he burst through the Atlanta Falcons’ offensive line and dove to block Michael Koenen’s punt. A teammate recovered the ball in the end zone, scoring the Saints’ first points in the team’s first game back at the Superdome following the destruction of Hurricane Katrina.
Dedicated in 2012, a statue now stands outside the Superdome highlighting Gleason’s electric moment.
Though Gleason will live on forever in the hearts of Saints fans, he is perhaps more known nationally for another reason. After being diagnosed with ALS in 2011 at age 34, Gleason quickly became a face for the disease. Today, the Gleason Initiative Foundation aims to help those battling neuromuscular diseases and support organizations searching for a cure for ALS.
Now, as Gleason moves past the two-to-five-year life expectancy window for those diagnosed with the debilitating disease, a project he began five years ago as a video journal for his unborn child has been made into a documentary, which will help raise more awareness for Gleason’s battle.
"Gleason," directed by Clay Tweel, has been accepted into the U.S. Documentaries competition at this year’s Sundance Film Festival. Tweel said his aim with the project is to create a powerful, in-depth look at the daily struggles of those with ALS and those who are tasked with caretaking duties.
"When I came on the project, what drew me to it was I could see how impactful the story was," he said. "When I met with Steve and Michel, I could see how special they were. I saw a little bit of the footage and knew I had to get involved."
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Most of the footage for the documentary had already been filmed by the time Tweel joined the project. He said there were nearly 1,300 hours of video to go through.
"To let that wash over me was intense," he said. "Steve had created this giant reservoir of material trying to make some videos for his child. On top of that, a couple guys — Ty Minton-Small and David Lee — embedded themselves with the family to help him film things when he no longer could. There were so many ways to go with the story and so many pieces of footage."
Tweel’s father is the lawyer for legendary boxer Muhammad Ali, so Tweel has experience around athletes with neuromuscular diseases. Ali has been diagnosed with Parkinson’s disease.
"I honestly did not know much about ALS," Tweel said. "I knew a little bit about Parkinson’s and [multiple sclerosis], but not a whole lot about ALS and how many people it affects. It’s more prevalent than I thought, which made one of the missions of the film to raise awareness and let people live in the daily challenges of the disease."
Tweel said one of his biggest challenges was choosing which direction to go with the film due to the vast amount of moving footage.
"[The storyline] was kind of there in the back of my mind, but seeing the footage and seeing how we could tell some of the story behind the story was important — Steve and Michel filmed a lot of personal moments," he said. "It’s pretty life-changing. It’ll put your own life into perspective real quick. The nature of the footage is really experiential. You’re getting a fly-on-the-wall view of the daily challenges of living with ALS."
After the film makes its appearances at Sundance, Tweel said he hopes to stay in contact with Gleason, his family and everyone who made the documentary possible.
"It’s been an incredible bonding experience," he said. "There are so many good, good people. I hope to stay in touch with all of them."
"Gleason" will be Tweel’s second Sundance film. His documentary "Finders Keepers" was accepted into last year’s festival.
"It’s crazy," he said. "I’ve spent the better part of my career trying to get a movie into Sundance. To have two in back-to-back years has left me speechless. It’s amazing and I feel very honored and lucky. I’m excited to share the film with the Sundance audiences."
"Gleason" is part of the U.S. Documentaries competition. It will premiere at the PC MARC on Saturday, Jan. 23, at 11:30 a.m. It will be shown seven times over the course of the Sundance Film Festival.
Jan. 23 — The MARC — 11:30 a.m.
Jan. 24 — The Grand Theatre — 3:15 p.m.
Jan. 25 — Temple Theatre — 9 a.m.
Jan. 28 — Perry’s Egyptian Theater (Ogden) — 6:30 p.m.
Jan. 29 — Prospector Square Theatre — 8:30 a.m.
Jan. 29 — The Grand Theatre — 6:15 p.m.
Jan. 30 — Library Center Theatre — 12 p.m.