After a Tragic Diagnosis, a Former NFL Player and His Wife Rally Support for ALS Research

One of the most iconic American sports moments happened outside of official play. On July 4, 1939, legendary first baseman Lou Gehrig stepped up to the podium in front of a sold out Yankee Stadium after his diagnosis of amyotrophic lateral sclerosis (ALS). The speech, known as the “'luckiest man” speech, came as the baseball superstar — who played in 2,130 consecutive-games and led the league in runs scored four times — was unable to hit a single home run in the spring of 1939. By the summer, he was forced to retire at the age of 36. And yet, Gehrig stood tall and inspired the world with his speech.

“For the past two weeks, you have been reading about a bad break. Yet today, I consider myself the luckiest man on the face of the Earth. When the New York Giants, a team you would give your right arm to beat, and vice versa, sends you a gift — that's something,” Gehrig said. “When you have a wife who has been a tower of strength and shown more courage than you dreamed existed — that's the finest I know.”

ALS, or Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, and it remains largely shrouded in mystery, 84 years after Gehrig’s announcement. It’s unclear what exactly causes the debilitating disease, and there is no cure or effective treatment to reverse its progression. It affects as many as 30,000 individuals in the U.S., with 5,000 new cases diagnosed each year. Most people with ALS will live for three to five years after first experiencing symptoms. And yet, researchers are making strides in our understanding of ALS and potential treatments, in no small part because of the dedication of those affected by the disease.

Born in 1989 in Los Angeles County, Eric Stevens was captain of his football team at UC Berkeley, and went on to play with the St. Louis Rams in the NFL. Soon after, he returned to his local community to become a firefighter and married his college sweetheart. In 2019, a month after his wedding, he was diagnosed with ALS following a series of concerning symptoms.

In 2021, Eric Stevens and his wife Amanda Stevens launched axeALS Foundation to raise awareness and funding for ALS treatments and clinical trials, help ALS patients and their families enjoy lives as full and normal as possible, and to encourage research for the prevention, alleviation, care, treatment and eventual cure of ALS. I recently spoke with Amanda Stevens to find out more about the couple’s deeply personal story, the athlete and first-responder community the couple has been able to galvanize, and how philanthropy overall can be a better ally in the fight against ALS.

“Just 29 years old”

Signed by the St. Louis Rams as an undrafted free agent, Eric Stevens had a brief stint the NFL before returning to Southern California to work for the Los Angeles Fire Department. In 2019, the first signs of trouble started. First, he experienced weakness in his left hand and twitching in his arm muscles. Soon, he had trouble gripping things — symptoms he initially attributed to his football days, or working as a firefighter. By August of that year, Eric Stevens was officially diagnosed with ALS.

“We had just gotten married, got home from our honeymoon. We were really looking forward to starting a family and just, you know, thriving in our new careers. I was a teacher. He was a firefighter,” Amanda Stevens told me.

The couple got smart about the disease and its impact on patients and their families. Not unlike cancer, the Stevenses came to understand how quickly the condition can progress. But they were also frustrated at how hard it was to access treatment. “I feel like ALS has just kind of gotten forgotten about because patients get diagnosed and then die so quickly,” Amanda said.

However, the couple’s broader community quickly rallied around them. They believed the combination of Stevens’ platform as an NFL player (his older brother Craig Stevens also played in the NFL), and his peers in both the NFL and the first-responder community, could help bring attention to the disease. At the start of 2020, Amanda Stevens outlined the couple’s story in a powerful TedX Talk, which has nearly 60,000 views. Their story also caught the attention of Ellen DeGeneres, who has had the couple on her show several times and gave them a $100,000 gift.

A foundation brings awareness, and fights for a promising treatment

On the heels of this early work, in 2021, the Stevenses launched axeALS Foundation. “We had a GoFundMe that raised a lot of money for us, which we’re extremely grateful for. But then we said, OK, how can we help other ALS patients going through a similar situation as us?” Amanda said.

The goal of the foundation is to raise money for trials and treatments and to expand access to participation in trials. Currently, there are only handful of FDA-approved treatments for ALS. And each of them can only extend life by a few months. Many ALS patients turn to clinical trials, but most studies are double blind, so only half of the participants actually receive medication. And no one knows what group they’re in. To make matters worse, many ALS patients are excluded from these trials when they are two to three years into the course of their disease.

Experimental treatments are another option available to patients through the government’s Compassionate Use program, which allows terminally ill patients to receive medications that are not yet FDA-approved. But access to these programs remains limited, and outpaces the approximately 5,000 people diagnosed with ALS annually in the United States, per the ALS Association.

ALS treatment is also extremely expensive, costing patients an estimated $300,000 a year, according to the axeALS Foundation. The Stevenses host a range of fundraising efforts to support the foundation’s work. Back in June, in Newport Beach, California, the charity hosted a golf tournament, which included celebrity golfers and attendees like Alex Mack, Cody Kessler, Jake Ryan and Jamaal Charles. Around 250 people attended. The tournament declined to comment on how much they raised.

Eric Stevens’ ability to rally his athlete peers is another example of the kind of unique philanthropic power that athletes and celebrities can bring to bear. There’s often money they can personally contribute to a cause, but for many of these figures, their biggest power is in galvanizing others to give and bring awareness to causes around the world. In the case of axeALS, the foundation partners with Athletes First, a sports management firm.

It’s unclear why, but athletes, first responders and veterans have higher rates of ALS. Amanda Stevens played soccer with superstar Alex Morgan at Berkeley. Morgan and her husband have supported axeALS. “They’ve been extremely supportive of the foundation, not just donating money, but jerseys, cleats, time, and posting on social media to help us gain more donations,” Amanda said.

With these funds and support, axeALS is fighting back against some dire statistics. The foundation made a gift of $486,000 to Massachusetts General Hospital and UC Irvine to open up an expanded access program so that more people can take advantage of the treatments happening there. The young foundation is just getting started, but looking ahead, Amanda said she’s keen on supporting more research — including looking into how head trauma and concussions may contribute to ALS.

Four years into the disease, Stevens keeps a lower profile these days. But he writes in a letter on his website, “This system is not working for patients living with ALS today. My hope is to make ALS a more well-known disease, raise funds for promising treatments and clinical trials, and motivate people in power to make changes that allow terminally ill patients to fight for their lives.”

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