Steve Gleason
Steve Gleason Michael Loccisano | Getty Images
Former New Orleans Saints safety Steve Gleason, diagnosed with amyotrophic lateral sclerosis (ALS) in 2011, has now lived with the disease for 15 years. As the Saints marked 20 years since his famous blocked punt in the first Superdome game after Hurricane Katrina, the NFL announced a $500,000 donation to Answer ALS' Champion Insights program, which investigates ALS in pro football players, other high-performance athletes, and military veterans and first responders, Good Morning America reported Monday, October 5, 2026.
Gleason cannot move, speak, or breathe on his own. "I'm still here. That still surprises some people," he told ABC's Robin Roberts, in words he builds letter by letter on an eye-controlled tablet.
His milestone carries meaning beyond New Orleans. Most people with ALS die within a few years of first symptoms, and families facing a new diagnosis often know little about what long-term breathing and communication support involves. ABC's report did not say when the NFL money will be paid or which specific projects it will fund, and those details remain unconfirmed.
A Breath Delivered by a Machine Every Day
The 15-year figure refers to time since diagnosis, not time on a ventilator. According to a Tribune News Service profile published by the Spokesman-Review, Gleason has been unable to walk, talk, eat, or breathe without human or technological help since 2014. He relies on a ventilator, a high-tech wheelchair, and a team of caregivers who provide 24-hour support.
Gleason described that reality plainly to ABC, saying he lives knowing each breath is given to him by a machine. He uses tape around his eyes, often decorated by his children, to hold his eyebrows in place so the tablet can track his gaze. He and his wife, Michel Varisco, have two children, Rivers and Gray.
The couple founded Team Gleason in 2011, the year of his diagnosis. The Spokesman-Review profile reports that the nonprofit has raised and donated more than $65 million to help people living with ALS, and that its sister research initiative, Answer ALS, is assisting 730 research projects in 35 countries.
Inside a Disease That Takes Movement but Usually Spares Thinking
ALS attacks motor neurons, the nerve cells in the brain and spinal cord that control voluntary movement and breathing, according to the National Institute of Neurological Disorders and Stroke. Early signs can include muscle twitches, cramps or stiffness, weakness in an arm, leg, or the neck, slurred speech, and trouble swallowing. Over time, people lose the ability to walk, use their limbs, and breathe unaided, while thinking typically remains intact.
NINDS says most patients die of respiratory failure, usually within three to five years after symptoms appear, though about 10% survive a decade or longer. Breathing help often starts with noninvasive ventilation, a mask worn over the nose or mouth, first at night and later full time. As breathing muscles weaken further, a mechanical ventilator may be needed.
Treatment may slow decline but cannot stop it. The FDA has approved riluzole and edaravone, plus tofersen for people with a specific SOD1 gene mutation, which received accelerated approval in 2023. Still, NINDS states that "there's currently no known treatment that stops or reverses the progression of ALS."
The disease usually begins between ages 55 and 75 and is slightly more common in men. About 90% of cases are sporadic, with no known family link. The CDC's National ALS Registry estimated about 33,000 Americans were living with ALS in 2022 and projects more than 36,000 by 2030. The registry notes those figures are likely an undercount, partly because newer therapies and better care may help people live longer.
Football, Military Service, and an Open Risk Question
The NFL's donation targets a question researchers have not resolved. A 2021 study published in a JAMA journal followed roughly 20,000 men who played in at least one NFL game between 1960 and 2019 and found they were nearly four times more likely than the general population to develop and die from ALS, according to UCLA Health. The study also found that players who developed ALS had longer careers than those who did not.
That research was observational. It showed an association between pro football and ALS, not proof that playing football causes the disease, and it cannot predict risk for any one former player. Veterans face a similar unexplained pattern. NINDS notes that some studies suggest military veterans are about 1.5 to 2 times more likely than the general public to develop ALS.
Champion Insights is designed to dig into why. The study is led by the ALS Therapy Development Institute with Augie's Quest and Answer ALS and was announced in August 2025. Participants give blood samples for whole-genome sequencing and metabolic testing and complete surveys on factors such as extreme exercise. Enrollment is open to veterans, elite athletes, and first responders, groups the institute says may be up to twice as likely to develop ALS.
Support for Families Facing an ALS Diagnosis
For most readers, the practical takeaway is knowing which changes deserve a medical visit. Occasional muscle twitches are common and usually harmless. Persistent weakness, a worsening grip, frequent tripping, slurred speech, or new swallowing trouble should be checked by a clinician, who can refer patients to a neurologist if needed. Readers should not self-diagnose from symptom lists.
Families caring for someone with ALS can ask about multidisciplinary clinics, where neurologists, therapists, nutritionists, social workers, and nurses coordinate care and equipment. NINDS also points to voice banking, which records a person's own voice before speech declines, and eye-tracking communication devices like the one Gleason uses. Around-the-clock care can strain household finances and caregivers, so families should ask the care team early about insurance coverage, equipment programs, and nonprofit assistance.
Former athletes, veterans, and first responders who want to help answer the risk question can review Champion Insights enrollment details with their doctors. Details on how the NFL's gift will be used may come later from the league or Answer ALS.
Gleason's 15 years show what sustained support can make possible, but his experience is not typical, and ALS remains a disease without a cure. The most useful steps for now are prompt evaluation of lasting weakness or speech changes, early planning for breathing and communication support, and following research such as Champion Insights as results emerge.
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Key Questions Answered
How long has Steve Gleason lived with ALS?
Gleason was diagnosed in 2011, so he has lived with ALS for about 15 years. He has relied on breathing and other support since 2014, according to a Tribune News Service profile.
What is the NFL donating, and to whom?
ABC News reported the NFL will donate $500,000 to Answer ALS' Champion Insights program. The program studies ALS in pro football players, other elite athletes, and military veterans and first responders. Payment timing and specific projects were not detailed.
What are early signs of ALS?
NINDS lists muscle twitches, cramps, stiffness, weakness in a limb or the neck, slurred speech, and swallowing trouble. Many of these have other, harmless causes, so persistent symptoms should be evaluated by a clinician.
Are football players at higher risk of ALS?
A 2021 study of about 20,000 former NFL players found they were nearly four times more likely to develop and die from ALS than the general population. The study showed an association, not proof that football causes ALS.
How do people with ALS breathe as the disease progresses?
Many start with noninvasive ventilation through a mask, first at night and then full time. When breathing muscles weaken further, some people use a mechanical ventilator, as Gleason does.
Is there a cure for ALS?
No. FDA-approved drugs such as riluzole, edaravone, and tofersen for a specific gene mutation may slow decline, but none stop or reverse the disease, according to NINDS.