The Voodoo Experience was a week or so away when producer Steve Rehage started working on Gleason Gras. “It started as a joke where [Steve] Gleason was explaining to the team that he’s lived a life of adventure and he wants to continue being adventurous and do things he loves,” Rehage says. “Now people are coming out wanting to do golf tournaments and this and that, and that’s not his lifestyle.”
“I’m sure golf tournaments are great and they might raise a lot of money, but I like music,” Steve Gleason says. “I like adventure. Music, food and football—three of the things I love best about New Orleans, I thought that’d be fun.”
Gleason Gras takes place Sunday at Champions Square, where Better Than Ezra with Collective Soul’s Ed Roland, Papa Grows Funk, MyNameIsJohnMichael, Big Sam’s Funky Nation, Preservation Hall Jazz Band, Theresa Andersson, Kyle Turley, Stanton Moore, David Torkanowsky, Paul Varisco and the Milestones, Kristin Diable, Andrew Duhon and Spyboy will come together to raise money to help former Saint Steve Gleason and others deal with Amyotrophic Lateral Sclerosis (ALS). The day is presented by the Louisiana Hospitality Foundation with the New Orleans Saints and Rehage Entertainment. The Saints don’t play until Monday night when they take on the New York Giants, so there will be an autograph tent, and the unveiling of a statue commemorating Gleason’s punt block against the Atlanta Falcons when the Superdome reopened September 25, 2006.
Gleason first thought something might be wrong last summer when he started to feel involuntary twitching in his muscles followed by unexpected weakness. Since then, he’s gone through a process of diagnosis-by-elimination to arrive at ALS, which causes the motor neurons that connect the brain and muscles to slowly wither and die. Gleason dramatically revealed his condition when he appeared as honorary captain at the Saints-Texans game, when he walked out to mid-field with his hand on Drew Brees’ shoulder.
“It was incredible,” Gleason says of walking on to the field. “It’s like most things that are incredible—it’s a little scary and challenging, and to expose yourself and to show some of your own vulnerabilities is scary, but in the end that’s what makes it so rewarding. It was a remarkable experience, just the team support, fan support.”
He then led the pre-game “Who Dat” cheer, which was its own challenge.
“People were cheering before the ‘Who Dat,’ so I was thinking to myself, ‘Should I just sit here? Should I wait?’ The sound, especially in the Superdome can be overwhelming, but it was great.”
Rehage and Gleason became friends through a chance meeting in 2007 when they were waiting for tables at Lola’s in Mid-City. “A four-top became available and we were just sitting outside having a glass of wine,” Rehage says. “The same day I had signed Rage Against the Machine [to play Voodoo], so I had made a pact not to tell anybody. After a couple of bottles of wine: ‘Look what we did today.’ [Gleason’s wife] Michel and Steve ended up at my house and we turned the Rage catalogue up to 11, and they were jumping up and down on my couches. We’ve been friends ever since. Went to the Super Bowl together. They were actually at my house in January in Los Angeles when he found out that this was the direction the doctors thought he was going.”
Rehage was in New York when Gleason blocked the Atlanta punt in 2006. “I had ordered dinner and I was trying to get settled from a crazy day at work,” he says. “I’m not that emotional when it comes to football, but I ended up on my coffee table stepping on my food, smashing my dinner. It is kind of a JFK question: Where were you when Steve blocked the punt?”
These days, Gleason’s future is unclear. There’s no cure for ALS, and only one form of treatment that’s FDA-approved. “It’s a drug called Rilutek,” Gleason explains. “it’s supposed to help delay progression by 10 percent, which is like one month.” There are things he’s doing to help his general health and well-being—massages, joint mobility therapy, treatment to improve circulation—and he’s in an experimental trial for a treatment that may delay ALS’ progression more effectively than Rilutek. For the most part, he’s learning to live with the disease.
“I’ve met with several alternative doctors and dietitians and speech therapists,” he says. “At the same time, there is technology and equipment that could be helpful—speech technology, basic equipment like a wheelchair or a cane. There is software available that allows you to type with your eyes. You can navigate the computer screen with your eyes. Those are things that have actually allowed people to live a really long time regardless of how the disease progresses, so that has been my focus: Getting out and raising money for drug research and equipment supplies and technology.
“I was actually speaking with someone today who said he had never heard of ALS, but he’d heard of Lou Gehrig’s Disease: ‘That was around with polio. Didn’t we take care of it in the ’40s when he had it?’ You won’t hear me referring to it as Lou Gehrig’s Disease because there are tens of thousands of people in the United States that have been diagnosed. It’s their disease. It’s their families’ disease. It’s their friends’ disease. It’s much more than just Lou Gehrig’s Disease.”
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