‘Awesome Ain’t Easy’ fundraiser illustrates Steve Gleason’s legacy

New Orleans Saints legend Steve Gleason has inspired fans with his iconic play and activism while battling ALS. Here’s how they can help.

This two-part series is in promotion of Team Gleason’s upcoming fundraiser, “Awesome Ain’t Easy,” on Saturday, May 29. We highlighted the efforts of the event hosts and the power of the New Orleans community. Here, we’ll turn to the efforts of Team Gleason, the importance of fundraising and what it provides to people with ALS and their families.

The New Orleans Saints organization and its fanbase are intricately tied together. After Hurricane Katrina, the Saints helped resurrect the city when it seemed unfathomable. A catalyst of hope was the blocked punt by Steve Gleason in the first game played in the Superdome following the catastrophe; his legacy continues now through a different battle. After being diagnosed with ALS in 2011, Gleason dove into not just his own fight, but for all individuals battling the disease.

This inspired two Saints fans to put on the upcoming event, “Awesome Ain’t Easy,” on Saturday, May 29. Equally important to the promotion of these efforts is knowing what exactly the funding goes towards, and how critical it is to those suffering from ALS. I spoke with Team Gleason’s Director of Development, Kearney Gay, regarding these initiatives and what they provide not just to those diagnosed with ALS, but to their families and caregivers.

As we begin to exit the COVID-19 pandemic, in a way like Saints fans moved on after Katrina, it’s taught people to not take the little things for granted. The ability to connect with friends or family, attending sports events, and other things almost given in people’s everyday lives — all of those connections were lost. One can only imagine the hindrance of communicating for someone with ALS.

Gleason is largely responsible for the innovative technology that helps improve quality of life for those with ALS and other neuro-muscular diseases. After challenging Microsoft to develop technology for people to live with some autonomy, they created an interface that employs eye-tracking technology to move their wheelchairs. Team Gleason recently partnered with Cox Communications to create an accessibility remote so those who have lost muscle control to ALS can change the TV channel. Their home automation technology restores mindless activities we don’t think twice about — turning on the lights, unlocking the door, or changing the thermostat.

Gleason’s notoriety plays a role in the organizational impact; resultantly, Team Gleason has seen their requests for assistance increase over the last two to three years — and during COVID. As does his candid, raw depiction of what it’s truly like to live with ALS on a daily basis on social media. It’s an incredibly frightening, life-alerting diagnosis. Team Gleason emphasizes early intervention as critical to improving the lives of those with ALS.

“That’s something we work with as far as ALS clinics across the country,” Gay emphasized on intervention. “When people are diagnosed, they can say to reach out to Team Gleason. They’ll help you with your needs as you progress through the disease. We don’t just help them one time, right? Our speech pathologist will talk to them, let them know what to look out for. And progress through – you might need one thing in the beginning and as it gets worse, the next. You need to plan your chair, speech device, and all those difference factors that we can help them with.”

Gay continued: “A lot of what we do is provide life-changing devices for people like the seat elevator. “When people think of ALS, they think of the inability to speak and loss of motor skills. You don’t think of everything as basic as being able to see someone eye-to-eye, to go into a place and not be under the counter.

“Raising yourself up to eye level with somebody, you and I take that for granted. Just having a conversation with somebody.”

Simple, everyday things we don’t think twice about. Intertwined with the progressive loss of basic motor skills is a denigration of self-worth. There are those that have retained some abilities or are early on in the process — but it requires the necessary technology to do so. If one still has dexterity and could cook, they can be rendered unable without a chair with a seat elevator.

“The majority of our fundraising efforts are for our program services. Helping people live with ALS, that is our true main mission. The innovation side is fun and exciting, and improving technology does help those people,” Kearney said. “I think it’s continuing to, and I see great strides in that. But the biggest part of what we’re trying to do is just help more people.”

One of Team Gleason’s biggest requests from patients all over the country is the seat elevator. Unfortunately, this integral component is considered an “added-on option” by Medicare and most insurance companies; a lot of critical, life-changing services are unaffordable and inaccessible for many. While he initially didn’t intend to become such an advocate, Gleason’s fighting spirit is intrinsic to his non-profit’s efforts.

“Steve has been integral in changing two laws on Capitol Hill already,” Gay told me. As many are aware, these efforts awarded Gleason the Congressional Gold Medal last year. “The advocacy side of what Steve does, we’ve been instrumental in trying to change some of these Medicare laws. They’re outdated, and they don’t make sense anymore. But it’s very hard and takes a lot of action.”

Unfortunately, Team Gleason’s efforts have been significantly limited during the pandemic. They largely rely on third-party fundraising, much like this upcoming event Saturday. One might not initially think about the impact of the disease on family or spouses who become full-time caregivers –with not much warning nor preparation. Mental health and respite care for these caregivers are some initiatives Team Gleason wants to further, but need serious funding to do so.

And that’s where the fanbase comes in here. The Saints have taught lessons in adversity, resilience, and leaving a legacy. It’s what galvanized the event hosts to come together and utilize their communities for something bigger than football. It’s what inspired me to become a fan when I was 11 years old.

I didn’t grow up in New Orleans, but my mom did. I couldn’t entirely understand the gravity of Katrina until flying down to help volunteer in December of 2005. Houses and boats were in the middle of the street; the eeriness of the silence and X markings on homes seared in my memory. There may be a moment some can point back to where it all hit. For me, it was on a walk with a newly stray dog at a shelter when it suddenly laid down in the street and wouldn’t move. It had begun to rain, and the dog had a traumatic flashback. I had to carry it in my arms back to the shelter.

The magic Sean Payton and Drew Brees brought to New Orleans can’t be understated, but neither can the impact of Gleason’s blocked punt. How many teams have a statue of a special teams player in front of their stadium? While the foundation suffered during the pandemic last year, Saints fans were awarded a moment of catharsis and escapism on April 6 – when ESPN re-broadcasted the game that symbolized “Rebirth,” leading to memoirs and faux-live reactions from fans and retired players on social media.

With our help, be it a share or donation online or attending the event this Saturday, we can rally around Team Gleason and award that same relief back to individuals with ALS and their families. Here’s how you can help:

Event Information

Awesome Ain’t Easy Fundraiser

May 29th – New Orleans

  • 11 am – 5 pm
  • $10 Donation
  • Trep’s – 4327 Bienville Street

Link to Event

Credit: Erick Carlson

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Team Gleason’s fundraiser, ‘Awesome Ain’t Easy,’ highlights Saints fans and the power of community

New Orleans Saints legend Steve Gleason’s non-profit Team Gleason is set to host its “Awesome Ain’t Easy” fundraiser with Delvin Breaux.

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This two-part series is in promotion of Team Gleason’s upcoming fundraiser, “Awesome Ain’t Easy,” on Saturday, May 29. We’ll explore the intricate relationship between the New Orleans Saints and the community, and how that inspired this event; then turn to the efforts of Team Gleason and the importance of funding in an interview with Director of Development, Kearney Gay.

Unique to the New Orleans Saints is transcendence past the game of football. There is an unparalleled bond between the city of New Orleans and the team — proof of that can be traced back to Sept. 25, 2006. When Steve Gleason blocked that iconic punt in the first game back in the Superdome after Hurricane Katrina, he fiercely embodied the notion of resilience.

And perseverance through tragedy would become uniquely personal to Gleason. In 2011, Steve Gleason was diagnosed with ALS, a neuromuscular disease considered terminal. Who could foresee that the ultimate hero had yet to endure his worst vicissitude of fortune?

A catalyst of hope and rebirth for a city devastated by tragedy, Gleason has since pivoted this tenacity into not just his own fight, but to improve the lives of all individuals diagnosed with ALS. It’s a battle people with ALS and their families can’t endure alone. It’s bigger than football. A feeling of which Saints fans are keenly familiar. Gleason’s fortitude on and off the field is nothing short of inspiring. It’s a fight, unfortunately, that requires significant funding; the loss of fundraising efforts for Team Gleason during the pandemic is substantial.

Just as Gleason’s actions helped revive the city, two New Orleans natives are rallying around his battle. Together, they created an upcoming fundraiser: “Awesome Ain’t Easy.”

Event Information

Awesome Ain’t Easy Fundraiser

May 29th – New Orleans

  • 11 am – 5 pm
  • $10 Donation
  • Trep’s – 4327 Bienville Street

Link to Event

There’s the saying, “Life imitates art,” but oftentimes, the variation on that is, “Life imitates sports.” Saints fans know how sports can transcend past the turf and parallel their lives in different ways. Sports can bring together a community; or in New Orleans, revive it. For New Orleanians, football has been a relieving source of escapism and lesson in adversity.

“One thing that was consistent for me, through my childhood and what I was going through was the New Orleans Saints,” event host Zack French said. “It was something I could always look forward to and help me escape. That’s where my passion came from. To win the Super Bowl, and just to watch the impact that sports can have on a city, and showing that it’s more than just a game.”

French is a Madden streamer who tries to recreate realistic playbooks similar to the Saints during the season. He’s found that familiar sense of community within streaming; it inspired him to reach out to Team Gleason during the pandemic and put on a similar virtual event.

“I’m a die-hard Saints fan. I’ve always been passionate about the organization, and Team Gleason, and what they do,” French said. “I started video game streaming to show that it could be more than just video games, and use my platform for the greater good.”

This year, he wanted to grow the event and use the power of communities to do so; this inspired him to reach out to the Saints NFL Fan of the Year, Steph Williams. “She brought me the idea of connecting my virtual stream with a live in-person event in transitioning back to normal. We formulated an idea together and used both of our communities to try to make it happen.”

Like French, Williams also turned to the Saints as a pillar of consistency and escapism growing up. “My family didn’t have a lot of money,” Steph told me. “But on Sundays, we would always get together for family lunch and watch the Saints. That was our routine since I can remember walking. Win or lose, the Saints were always something that brought my family together.”

Williams continued: “And then Katrina hit. Most of my family was displaced because of the hurricane. I talk about the men that the team has. They’re amazing players, but even better men. To see them embrace such a broken community, and put their arms around us and say, ‘hey, we’ve got you.’ It wasn’t okay for a lot of people after Katrina, but the Saints made us feel okay. They made us forget we were living in a FEMA trailer, that we lost all our pictures.”

Williams saw Sean Payton, the locker room, the players and the way they embedded themselves in the community; it inspired her to want to be more than just a fan.

“It really got my wheels turning to say, I can do the same thing,” Williams said. “Maybe not on their level, but there’s different ways I can work with others to make an impact. I share a quote that Tom and Gale Benson had in the Super Dome prior to the remodel. ‘Legacy is not what you leave for people, it’s what you leave in people.’ I felt truer words couldn’t be spoken for what it means to be a part of this fan base, this family.”

“That’s the rebirth. That’s the leadership. Sean Payton, Drew Brees, who nobody wanted, right? And then blocking that punt. It was the perfect storm of things coming together. Ever since, we’ve been on a ride. They’re just such good people,” she finished. “It makes it easy to be a fan.”

And French added: “One thing it speaks to, being from Louisiana, Saints fans, just resilience. I think everything points back to resilience.”

A lot of that legacy is intricately tied to Steve Gleason, and his refusal to wave the white flag in the face of a terminal diagnosis. Just as Gleason helped revive a city, his organization Team Gleason needs the community to rally around them. It relies largely on fundraising; the hosts noted this as a pointed reason for wanting to put on the event. Through the power of community, they were able to get several players, both current and past, to further their efforts in this fundraiser.

Jameis Winston donated a signed a football for a consecutive year; last year was his first piece of Saints memorabilia. This year, it could be his first piece as the next starting quarterback. Or, it may end up being Taysom Hill, whose jersey will be auctioned off as well. Saints Hall of Famer Tyrone Hughes will be in attendance, as well as former New Orleans cornerback, Delvin Breaux. Delvin was able to come on ESPN New Orleans radio on 100.3 FM earlier to share his personal connection to the event, which you can listen to in Hour 3 here.

We’ll explore the necessity of this funding and what it provides to people with ALS and their families in the interview with Director of Development, Kearney Gay. But the efforts and tenacity of French and Williams are nothing short of inspiring. They’re the type of individuals that make you proud to be a Saints fan. As is Steve Gleason, and the players that have rallied around him for this event. Whether you’re in person with the hosts at Trep’s Nola, join the virtual Madden stream, or simply share the word, you’ll help make Awesome a bit Easier.

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