Amanda and Eric Stevens along with daughter Peyton and dog Duke. Eric Stevens is a Palos Verdes Peninsula High graduate who is an ex-NFL player and firefighter diagnosed with ALS at the age of 29. The Stevens’ formed axeALS Foundation in partnership with UC-Irvine to establish a program for ALS patients who normally would not qualify for clinical trials. (Photo by Riley Cooper Photography)
By Melissa Heckscher, Contributing writer
In the four years since former NFL player Eric Stevens was diagnosed with ALS, a fatal, degenerative neuromuscular disease also known as Lou Gehrig’s Disease, he has lost a lot of things:
He has lost his ability to feed and bathe himself. To brush his own teeth or get himself dressed. To get up from a chair — or lift his 2-year-old daughter into the air.
But he hasn’t lost his hope. After all, he can still walk unassisted inside his family’s San Pedro home. He can still eat normal foods. He can still read his daughter bedtime stories, sing her songs and cuddle her in bed.
And he’s still here.
“Even though it seems like the end of the world, your perspective changes on what’s really important in life,” said Stevens, 33, who wasn’t feeling well enough to do an in-person interview but instead communicated via email. “Just being alive and being present is enough.”
Amyotrophic Lateral Sclerosis is a disease in which motor nerve cells can no longer send messages to muscles. It is an irreversible condition that eventually renders its victims unable to speak, eat and breathe on their own, with the average life expectancy being about two to five years after symptoms appear.
But while many ALS patients don’t live past year four, Stevens has defied the odds.
“Not many ALS patients can say that they’re still walking, talking and eating almost four years into diagnosis; most are dead,” said Stevens’s wife, Amanda, 32. “Eric is living proof that experimental therapies can work.”
The Stevens family credits the former football player’s current condition to the fact he received an experimental medication called NurOwn, a drug that has not yet received FDA approval but has helped a subset of ALS patients in clinical trials. It remains to be seen how much the medication can slow the disease — it likely isn’t a cure— but Eric and Amanda Stevens are now fighting to make sure other patients have the same chance.
“Obviously a cure is what we’re all hoping for, but treatment is really all that Eric wants,” Amanda Stevens said. “That could help turn the disease from fatal to chronic, into just a condition that he needs to manage. That’s what we’re fighting for.”
Finding hope in experimental medications
It was in 2019 when Eric Stevens first noticed something was wrong: His left hand felt weak and his arm muscles were twitching. He had trouble gripping things with his hands.
At first, he thought it was an old football injury or something that happened on the job as an LA city firefighter. Stevens 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.
Shortly after noticing the symptoms — and just months after his wedding to Amanda — he was diagnosed with ALS.
“When you get a terminal illness like this, obviously a cure would be the best-case scenario,” Stevens told the Southern California News Group in 2019, when his illness was only noticeable by a slight slur in his speech. “But what you really want is just a chance to fight it, a chance to live. Treatment is all we ask for.”
But hope doesn’t come easily. In addition to the grim life expectancy, the disease has no cure, and the few FDA-approved treatments that currently exist can only extend life by a few months.
“I’ve had so many patients tell me they wish I told them they had cancer instead of ALS,” said Dr. Namita Goyal, the UC Irvine neurologist who has been treating Stevens since 2021. “At least now in cancer there are many treatment options.”
Many ALS patients turn to clinical trials, but since most studies are double-blind, meaning only half of the participants will actually receive the medication and they don’t know which group they are in. Many ALS patients are also excluded from these trials once they are two or three years into their disease.
The only other option is experimental treatments through the government’s Expanded Access, Program (also known as the “Compassionate Use” program), which allows terminally ill patients to receive medications that are not yet FDA-approved. For now, access to these programs is limited — certainly not robust enough to treat the estimated 5,000 people per year diagnosed with ALS in the United States, according to the ALS Association.
But it may get better. In 2021, President Joe Biden signed into law Accelerating Access to Critical Care for ALS (ACT for ALS), which will make experimental drugs more available to patients who cannot participate in clinical trials.
While there’s no guarantee experimental treatments will work, they offer ALS patients what they want most of all: Hope.
“People with ALS just want a chance at something,” Amanda Stevens said. “You’re told, ‘You have two to five years to live and there’s nothing we can do for you.’ That’s not OK with us. We’re not going to take that for an answer.
“You want to hang onto hope,” she added, “but if there’s nothing you’re fighting for, then that hope starts to dwindle.”
In that sense, her husband got lucky. He was selected for a NurOwn clinical trial in 2020, and shortly thereafter, was also selected to receive the drug through the Extended Access Program.
After he received five treatments by spinal injection every other month, Eric and Amanda Stevens are convinced the drug works — even though they still don’t know if he received the actual medication in the trial.
“We think it’s the reason he is still speaking, eating well, breathing strong,” Amanda Stevens said, “he’s still able to walk, he still reads our daughter books, sings her songs.”
Goyal gave a cautious nod, adding that she sees small decreases in Eric Stevens’s disease progression: His breathing numbers are better, and his symptoms aren’t as advanced as other patients she monitors. Still, while two to five years is the average, Goyal said, she has seen patients survive longer than that, even without experimental medications.
“I actually think Eric may be one of the sub-population of patients that we think may be a responder to NurOwn,” she said. “In my experience, I do think that I would have expected (his symptoms) to be more advanced at this point.
“We certainly are cheering him on.”
From ALS to altruism
Whether it was because of his career in football or his job as a firefighter, Stevens’s struggle has garnered a viral outburst of support. Within months of his diagnosis, a GoFundMe page started by his brother racked up hundreds of thousands of dollars (as of this writing, that same page had raised $1,286,850 in total), money that has been used to pay for Stevens’s care.
The family’s mission page on Instagram, TeamStevensNation, has more than 37,000 followers, with thousands of people regularly posting words of encouragement.
Realizing they could use their public platform to spread further awareness, Eric and Amanda Stevens formed the axeALS foundation, a nonprofit dedicated to helping ALS patients get access to experimental medications, and funding more research into causes and potential cures.
To date, the foundation has raised more than $1 million through donations and charity golf tournaments, which it holds throughout the year. The most-recent golf tournament was Monday, April 3, in Orinda, with others scheduled for June 12 in Newport Beach and Sept. 11 in Long Beach.
“Our intentions were to bring awareness to the disease and put the spotlight on the broken system,” Eric Stevens said. “It has become a lot larger than we ever thought. I am grateful for all the support we’ve gotten and I hope we can leave ALS better than we found it.”
Perhaps axeALS’s biggest triumph came earlier this month, when the foundation announced a partnership with Massachusetts General Hospital to establish a new Expanded Access Protocol program for ALS patients at UC Irvine. To kick start the program, axeALS gifted $486,000, which will give 30 ALS patients access to treatment over the next three years.
“Obviously, my goal is, ‘How can I keep Eric alive?’ But it will help a lot of other people as well, so it’s something we’re really proud of,” said Amanda Stevens, who acts as the president of axeALS. “We couldn’t have done it without all the donations we have received.”
As for the Stevens family, the GoFundMe page is being used to pay for the patriarch’s daily care, a varied regimen that includes chiropractic care, physical therapy, dozens of vitamins and supplements, and equipment, including a power wheelchair that Stevens now needs to leave the house.
The family also received a $100,000 gift from the “Ellen DeGeneris Show” after appearing on her program three separate times. The money was gifted so the couple could put a down payment on their first home.
Everything helps.
The cost of supportive care for an advanced ALS patient costs $200,000 to $300,000 a year, including lost wages, according to the ALS Foundation. Neither Amanda nor Eric Stevens is working, with the former doing all of the caretaking for the latter and their daughter.
“It has been extremely hard watching my wife have to pick up the slack and not being able to be as hands-on with my daughter as I always imagined I would be,” Eric Stevens said. “Amanda is not only just getting by, she’s raising a smart, brave, sweet, little girl and handling everything with me.”
With a kind, unwavering voice that tells you she’s used to explaining the ins and outs of their four-year nightmare, Amanda Stevens’s voice only breaks when she talks about their daughter, Peyton.
“This is all she knows,” she said of the blonde little girl who has her father’s eyes and loves her toy firetruck most of all. “She knows her Dad is different. She helps me with his pills every morning. She knows, ‘Daddy can’t pick me up.’
’“But I will say, he’s arguably the most present dad,” she added. “We’re home all day. He sits in that recliner there and spends every single moment with her. That’s the silver lining in all this — that we get to be home with her every day and that we make these memories with her.”
Eric Stevens said he just tries to take things one day at a time.
“I try to focus on what I can control, like having a good attitude, being grateful for the little things that people take for granted like waking up every morning, being with my wife and daughter and family, my dog, trying to remain present,” he said. “I stay hopeful by not looking too far ahead — and obviously you do sometimes — but you have to bring yourself back.
“I also stay hopeful that I can find a treatment,” Stevens added, “that will stop or slow this down.”
Originally published at Contributing Writer