Gleason speaks publicly for first time since ALS announcement .wwltv.com
Bradley Handwerger / WWLTV.com Sports Reporter
METAIRIE, La. ― Steve Gleason slowly walked up to the dais in the media work room at the Saints facility Tuesday afternoon
But something was askew.
Gleason, the former Saints special teams ace who announced in September that he was diagnosed with amyotrophic lateral sclerosis, or ALS, immediately pointed out what was different.
“This is the first time I’ve been in front of any cameras since we went public in September,” Gleason said. “Obviously, I don’t move or talk quite the way I used to. I was a little nervous that I’d look kind of silly up here so I wore this mustache just to confirm that I look a little silly.”
Gleason spoke with media Tuesday about Sunday’s Gleason Gras, a day-long event to raise money and awareness for his family’s foundation and trust.
It’s a day of music (Better Than Ezra, Papa Grows Funk, Theresa Andersson and more), food (Acme Oyster House, Arnaud’s, Cochon, Mr. B’s and more) and football (current Saints player and the Lombardi Trophy will be there), three things Gleason said have made him fall in love with the city.
The festival is straight out of Gleason’s playbook.
“Galas are great but I can’t go,” he said. “I never could go. So, I said let’s think a little more creatively.”
He added, “I said I can’t golf. I can still listen to music. I love music. Certainly New Orleans music has had a huge impact on me over the last 11 years. When they brought the idea, I thought it made sense.”
First and foremost, though, Gleason has a goal of raising awareness of ALS.
He’s currently taking the only FDA approved drug for ALS patients and also is involved in a clinical trial.
Progress, he said, is hard to decipher.
“That’s the hardest part in talking to doctors,” Gleason said. “People progress so differently. Some people I know it totally affects their arms. Some people it goes right to the lungs and it’s very quick. There’s no categories. They can’t categorize you necessarily in terms of progression.”
Gleason and his wife Michel recently welcomed son Rivers into their lives. When he was first diagnosed, they talked about whether to start a family or not.
Rivers’ birth answered that question.
“I certainly wanted to but I left the decision to her,” Gleason said. “Nine months later, I think it was an amazingly beautiful decision.”
Meantime, it’s what Gleason is doing publicly and with his family – his father is coming to town Wednesday for Thanksgiving – that he hopes strikes a chord with the ALS community, which he said is tight knit.
“If I can help show and inspire people who have been diagnosed with ALS to continue living their life and if we can as a group help those people who have been diagnosed to continue to live a life that’s enriching and extraordinary, then I think that’s part of my goal,” Gleason said.
http://www.wwltv.com/sports/New-Orleans-Saints-Steve-Gleason-Gras-ALS-134358498.html
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