“I could just tell my strength wasn’t there,” remembers Eric, now 30. “I was having a hard time getting the ladder up.”
It was a surreal sensation for Eric, who stands 6 feet tall and has embodied physical power and prowess for as long as he can remember. He grew up in the South Bay, spending plenty of time surfing, skateboarding and riding BMX with his three older brothers—not to mention playing “every sport,” as he describes it.
But football became his main focus through adolescence and young adulthood. Eric became team captain as a fullback at UC Berkley and eventually was picked up by the St. Louis Rams in 2013. Back in those days, he didn’t have much of a neck—just a bulge of muscle supporting his head. And while he’s gotten skinnier since joining the Los Angeles Fire Department in 2015, he hasn’t become a pencil-neck either.
His sudden loss of strength seemed odd, but not necessarily a cause for concern. “I thought maybe I had a pinched nerve or something from an old football injury,” he says. “I was getting older, and older guys always tell you, ‘Just wait until you hit 30.’ I was starting to get close to 30 and thought, ‘Man, this is what everyone’s talking about.’”
Most 30-year-olds would admit to being a little less sprightly than they were in their 20s, but struggling to do things like trim your fingernails or press a button on the TV remote is very different. When the latter started happening to Eric, he knew something very unusual was going on. He googled his symptoms, and the letters “ALS” popped up in nearly every search. He felt a low-simmering anxiety starting to build, but he tried to keep those feelings at bay.
“This is the worst disease in the world, and there are finally treatments that are actually working and slowing the progression. Some people are having reversals, and no one can get to it unless you get picked for a trial?”
This was all happening against the backdrop of Eric and his fiancé, Amanda, planning their wedding. The two met in college through mutual friends in athletics—she was playing soccer at the time. They fell hard for each other, maintaining their relationship long-distance after college while he played pro football in St. Louis and she pursued her master’s degree and teaching credentials in the San Francisco Bay Area. After Eric left the NFL to become a firefighter back home in Los Angeles, Amanda moved south to join him. The two were finally exactly where they wanted to be—making their life together.
“Everything seemed normal, and we were excited for the wedding,” remembers Amanda. “I didn’t really know what was going on. I remember him mentioning every now and then that his left hand was getting weak. It was harder for him to open a water bottle, or if I was cooking something and I needed him to open a can or a jar, it was a little bit harder for him. But I didn’t think anything of it.”
“I didn’t want to stress her out,” says Eric. “I didn’t want to stress our family out. The wedding was the main focus. I thought, ‘Let’s get married. Let’s just forget about this, and it’ll go away.’ I thought I could forget about it and just keep on trekking.”
They had a beautiful wedding in July, just a few months after Eric first started feeling unusual. By the time they got back from their honeymoon, he knew it was something they had to confront together. They made an appointment to see a neurologist, and in August Eric received his diagnosis.
Often called Lou Gehrig’s disease, amyotrophic lateral sclerosis (ALS) is a motor neuron disease that causes the death of neurons that control voluntary muscle movement. The list of early symptoms—muscle twitching, weakness, slurred speech—were already familiar to Eric, who appeared to have a textbook case. Later-stage symptoms include paralysis and difficulty breathing, with most ALS patients succumbing to respiratory failure within five years of their diagnosis. While there are some treatments that can extend life for a few months, there is no cure for ALS.
Eric may have had a hunch based on his own research, but to see his worst fears confirmed was still difficult to process. “I was in shock,” he remembers. “I think I almost passed out. Amanda had to catch me.”
“The doctor just sat there and looked at us,” says Amanda. “I was holding Eric and he was holding me, because we both obviously weren’t doing well. And then the doctor said, ‘Yeah, it’s ALS. Good luck.’ And then he left the room. We were just sitting there like, ‘Is this real? He’s 29. He’s in the best shape of his life. We just got married.’ We thought that this doctor has to be wrong. There’s no way this is what’s happening.”
Unfortunately, when they sought a second opinion, it only confirmed the first. Eric had ALS, and the second doctor explained that while there are some treatments that can extend life for a few months, there was very little they could do.
Eric felt lost. Up to this point in his life, he’d always faced challenges head-on, whether it was on the football field or in the midst of a raging fire. And now, suddenly faced with the greatest challenge of his life, he was expected to simply stand by the sidelines. That was never going to work for Eric, so he started looking for another way forward—anything that could give him a fighting chance.
One of the doctors had told Eric that there were some promising treatments in clinical trials. “I thought, ‘Awesome, that’s the first good news I’ve heard in months. So how do we get it?’”
The doctor explained the expensive, methodical, years-long process of getting a treatment approved by the FDA—not something likely to happen in the time frame Eric would need in order for it to save his life. Hypothetically, he could participate in a trial if he met certain criteria. But even if he was picked, it would be a 50% double-blind placebo study—in other words, it’d be a coin flip as to whether he’d get the actual treatment anyway.
“That just totally caught me off guard,” says Eric. “This is the worst disease in the world, and there are finally treatments that are actually working and slowing the progression. Some people are having reversals, and no one can get to it unless you get picked for a trial?”
Eric zeroed in on one treatment in particular: NurOwn, an experimental stem cell therapy developed by U.S.-Israeli biotech company BrainStorm Cell Therapeutics. In a nutshell, NurOwn takes mesenchymal stem cells harvested from a patient’s own bone marrow, converts those stem cells into a type of cell that secretes molecules to promote the growth of nervous tissue, then injects them back into the patient.
While clinical trials are still underway, recipients of the drug have reported marked improvement. NurOwn isn’t the only promising ALS treatment in the works, but it is by far the furthest along in seeking FDA approval, with a Phase III clinical trial currently underway.
Once Eric knew there was a potential treatment for his condition, he set out to make a plan. “That spurred my motivation to really start this movement and try to make people aware of not only ALS, but that there is treatment there for people and we just need a different pathway to get access.”
Terminal patients fighting for access to experimental treatments is nothing new in this country. In 1988 the AIDS activist group ACT UP staged a massive protest at the FDA’s Maryland headquarters, and their continued pressure led to increased access for experimental AIDS drugs through the FDA’s Parallel Track policy.
More recently in 2018, former Navy pilot and ALS patient Matt Bellina successfully advocated for the passing of a federal Right to Try law, which theoretically increased access to ALS therapies like NurOwn. In reality, however, the legislation doesn’t mean much for patients, as it doesn’t require the drug companies themselves to grant access, nor does it compel health insurance companies to pick up the high costs of experimental treatments. In the case of NurOwn, the passing of the Right to Try law ended with only one ALS patient receiving the experimental treatment outside its Phase III trial: Matt Bellina.
Eric, his family and friends soaked up all the information they could about the mind-numbingly complicated issue of accessing experimental treatments. They decided that the first step was actually fairly simple: People should know that there are treatments for ALS and that the problem is getting them to the people who need them.
Together they launched Stevens Nation, a website and social media account aimed at increasing awareness of the issues surrounding ALS, encouraging people to contact their representatives in Congress and raising money to help cover Eric’s medical bills. Eric’s brother came up with #AxeALS—a social media campaign that took hold in the firefighting community worldwide, with fire stations making huge #AxeALS banners and posting photos on social media of the banners hanging from their engines.
Stevens Nation was invited onto the field to be honored at a Cal football game, and dozens of elite athletes—from NFL players to big-wave surfers—have pledged their support. Eric’s story even made its way to talk show host Ellen DeGeneres, who invited Eric and Amanda to be guests on her show … twice.
For Eric, the spotlight felt odd: “I’m kind of reserved, kind of shy, so the fact that I was going on Ellen and talking to a live audience was super nerve-racking,” he says. “But I just told myself, ‘You’ve got to suck it up. This is for the ALS community. It’s not about me. This is about a lot of people suffering. You’ve got to jump out of your comfort zone to help a bunch of people here.’ Amanda was a lot of help. Having her with me, she was solid as a rock.”
In fact, Amanda’s role in the fight for ALS treatments goes well beyond being supportive for Eric. She’s been an integral voice for Stevens Nation and gave a deeply moving TED talk at the TEDxBigSky event in Montana earlier this year. After all, it isn’t just Eric’s life that has been upended by ALS, although you won’t hear Amanda complaining.
“Eric’s really fighting the hardest here,” she says. “I’m trying to help him and be there for him in any way that I can. He’s the one who’s feeling his body changing. He’s the one who can’t get the treatment that could help him. I’m trying to be positive and strong for him.”
Together, Eric and Amanda have taken their fight as far as Washington, D.C., where they met with members of Congress on both sides of the political aisle as well as White House staff. Eric’s brothers have made multiple follow-up trips to meet with legislators, and they’ve found no shortage of lawmakers sympathetic to their cause.
Unfortunately, that sympathy hasn’t led to direct action. “It comes down to a funding issue,” Amanda explains. “No one wants to allocate the money to help fund this treatment.”
Experimental therapies like NurOwn are incredibly expensive, and Eric and Amanda estimate that providing treatment just to the 200 patients enrolled in the Phase III clinical trial—remember, only 50% of participants would otherwise get the actual treatment—would cost between $10 million and $20 million. That wouldn’t even cover those living with ALS who aren’t in the trial.
To further complicate things, the COVID-19 pandemic has dominated the media landscape, making it harder for Eric and his team to get the attention and support they need for ALS issues. Still, Stevens Nation continues pushing forward.
They’ve started #PushForTreatment, a new social campaign challenging firefighters, athletes and celebrities to post videos of themselves doing push-ups to help raise awareness. They’re continuing to put pressure on public officials to help fund access to treatment and are even exploring the possibility of private funding.
Most importantly, they’re still hopeful, which makes sense when you consider who Eric is and the trajectory his story has taken. He’s calm, competent, empathetic—the kind of person who can lead a football team to victory or act as a pillar for a community of people with a terrible disease. Eric was diagnosed with ALS less than a year ago. Today he’s arguably the world’s biggest voice in advocating for people with ALS.
“You have to take it one day at a time,” he says. “Today I can still walk, I can still talk, I can still have this conversation. Those are the kind of positives that you have to hold on to, because there are a lot of people in my same shoes who are progressing faster and are in a worse condition than I am. But I’m hopeful that all this hard work is going to pay off. Something is going to budge here, and we’re going to help a lot of people.”
