By Melissa Heckscher, contributing writer
Eric Stevens doesn’t want this to be a sad story.
Yes, the former NFL player has ALS, a fatal neuromuscular disease that quickly renders its victims unable to speak, eat and breathe on their own.
Yes, he was just diagnosed in August, a mere month after marrying his college sweetheart and after a successful career in football turned into a promising future as a firefighter.
Yes, the 30-year-old Palos Verdes Peninsula High grad is already starting to feel the devastating progress of the disease: the trembling muscles, the slurred speech, the fatigue.
But he has hope.
“When you get a terminal illness like this, obviously a cure would be the best-case scenario,” said Eric, his words slow and measured, the slurring in his speech only slight, for now. “But what you really want is just a chance to fight it, a chance to live. Treatment is all we ask for.”
ALS, also known as Lou Gehrig’s disease, causes the death of neurons controlling muscle movement. The life expectancy from the time of diagnosis is two to five years, though paralysis comes even sooner.
It has no cure, and current treatments only extend life by a few months; however, drugs currently in clinical trials — particularly a stem cell-based treatment called NurOwn, currently starting phase 3 trials — are showing great promise, having demonstrated the potential to slow or stabilize ALS progression.
And it is on this promise that Eric and Amanda are hinging their hope.
“Yes, it’s a sad story — but it could have a happy ending,” said his wife, Amanda, 28. “That’s the part we are holding onto. This isn’t the life we pictured or planned for, but we just want that little bit of hope.”
Inspiring “Team Stevens Nation”
It was last March when Eric first noticed something was wrong. His left hand felt suddenly weak, and his arm muscles were twitching. Just a little bit, at first.
He thought maybe it was an old football injury, or that maybe something had happened on the job. Eric played football for Cal and went on to join the St. Louis Rams as a free agent in 2013. He joined the Los Angeles Fire Department in 2015.
“I thought maybe I had a pinched nerve,” said Eric, the youngest of four brothers, all of whom grew up in San Pedro. ”I just kept sweeping it under the rug. I just figured it would go away, but it got progressively worse. Simple things like opening up a water bottle or trimming my fingernails started becoming hard.”
After researching his symptoms, he began to fear the worst. Still, he waited until after the July 27 wedding and subsequent honeymoon to talk about it with his family.
“I thought, ‘There’s no way,’ ” said Amanda, who works as a second-grade teacher in Orange County. “I told him, ‘You’re too young, you’re too healthy, you’re too fit. There is no way.’ ”
But after two different doctors gave them the same diagnosis, the newlyweds took the devastating news — and immediately started searching for hope.
But hope doesn’t come easily. A diagnosis of ALS generally brings with it a grim future. Even if Eric were to be accepted into a clinical trial, there would only be a 50 percent chance of him actually getting the medication, since studies are double-blind, meaning half the participants receive only a placebo.
Secondly, even if the phase 3 trials of NurOwn are successful, it could take several years for the drug to come to market.
“There’s a chance — for the first time ever — to help people with ALS,” Eric said. “It’s there. It’s right at our door. It’s so close, but unfortunately ‘so close’ is years away, and years are something that we don’t have. So something has to change.”
What the Stevens family really wants is for NurOwn to be fast-tracked by the FDA, similar to how the FDA rushed the approval of a long-awaited cystic fibrosis drug just last month — or how the FDA fast-tracked the approval of AZT for HIV in 1987.
It’s a risk, Stevens acknowledged, but it’s one he’s willing to take.
“We have a term in the fire department that says, ‘You risk a lot to save a lot.’ There’s a life on the line, you’re going to risk your life to save that person,” he said. “I think the FDA needs that same approach. People are dying and there’s treatment that’s showing promising results. So you have to risk a little bit more to give these people a chance.”
Leading a movement
Maybe it’s because he was an NFL player and knows the sorts of people who can Tweet #TeamStevensNation to thousands of followers. Maybe it’s because he is a firefighter and therefore part of an extended family that spans the planet.
Whatever the reason, Eric and Amanda say the support they’ve received has been overwhelming, particularly in the firefighting and law enforcement community. A GoFundMe page set up last month has raised $463,606 thus far.
Social media helps. The “Team Stevens Nation” pages they’ve set up on Facebook and Instagram are filled with photos of their supporters — many of them firefighters — all holding signs or banners reading “#AxeALS,” the one-word directive that has become their tagline.
Eric and Amanda have also been the subject of numerous local and national news stories, including a feature segment on “The Ellen DeGeneres Show” that aired Monday, Nov. 11, on NBC.
“First and foremost, we want to raise money for Eric’s treatment,” said Eric’s cousin, Amber Stevens, an event production coordinator who volunteered to organize a Nov. 23 fundraiser for Eric at Seaside Lagoon. “We want to create a legacy event, something that Eric can put his name toward.”
It’s a massive community effort. Police cadets are volunteering their time to provide security for the all-day event. Mickey’s Deli in Hermosa Beach is providing food. Family and friends are spreading the word and offering constant support.
“We’re definitely not alone,” Amanda said.
According to the ALS Foundation, the cost of supportive care for an advanced ALS patient can run more than $200,000 a year, including lost wages. Furthermore, if NurOwn or another experimental medication becomes available, it likely won’t be covered by insurance until it is FDA approved.
Last year, Brainstorm Cell Therepeutics, the U.S.-Israeli company that developing NurOwn, had considered offering the treatment to the public under the government’s new Right to Try Act, which enables terminally ill patients to try experimental treatments not yet approved by the FDA; however, it decided not to participate since the drug would be too expensive for patients — likely hundreds of thousands of dollars per person — and the company couldn’t find viable ways to help patients afford it. Brainstorm CEO Chaim Lebovits has said the Right to Try Act “cannot be only for the rich,” according to a Reuters report,
But Eric and his family just want a chance.
“There’s no cure for cancer. There’s no cure for HIV. There’s a lot of diseases that don’t have a cure, but you can treat them and have a normal life,” Eric said. “And really all you ask for is chance — a chance to fight and a chance to live.”
For now, Eric and Amanda are looking to the future. They’re going day by day, comforted by the outpouring of support, determined by the momentum that they will beat this battle.
“I guess you could say this is our new normal,” said Amanda, who took an unpaid leave to be by Eric’s side. “We wake up every day and we fight together. We want to start a family and buy a house and do all the things newlyweds do, but unfortunately, this is our mission right now.”
“I think everyone is fighting their own battle in some way, shape or form,” Eric said. “And our battle right now is fighting for my life.”
HOW TO HELP:
To find out more about ALS or buy tickets for the Nov. 23 fundraiser, go to www.StevensNation.com.
IF YOU GO:
- Community Fundraiser and Cornhole Tournament
- Event will feature food, drinks, cornhole games, a silent auction and live music.
- When: Saturday, Nov. 23, 11 a.m. to 6 p.m.
- Where: Seaside Lagoon, 200 Portofino Way in Redondo Beach
- Tickets: $25 (includes lunch)
- More information: www.StevensNation.com.
