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.
Little known fact:
I was afraid every single time I stepped on the field with the @Saints Every time I crossed the line, I acknowledged the fear. I reminded myself that I had prepared, I knew the environment, my opponent, and my opportunity. "Proceed with your very best effort."— Steve Gleason – "Live Impossible" (@SteveGleason) April 7, 2020
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
May 29th – New Orleans
- 11 am – 5 pm
- $10 Donation
- Trep’s – 4327 Bienville Street
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