Eric Stevens
Eric's Story
Eric was a participant in the NurOwn Phase 3 trial and first round of EAP at Cedars-Sinai. Initially the principal investigator was neurologist Dr. Robert Baloh. Eric then completed the second round of EAP at University of California at Irvine with neurologist and principal investigator Namita Goyal. Eric received 3 doses in the Phase 3 trial from February 2020 through June 2020, and additional doses in the EAP in 2021 and 2022.
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Eric sustained multiple concussions and repeated sub-concussive hits in his athletic career. He played football and wrestled in high school then went on to play fullback in college for the CAL Bears where he was a team captain and earned the Joe Roth Award for courage and sportsmanship. In 2013, Eric was signed by the St. Louis Rams as an undrafted free agent but suffered more injuries and concussions. He also experienced repeated sub-concussive impacts in a lifetime of surfing and riding motorcycles.
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Eric’s ALS symptoms began in March 2019 with bulbar symptoms and onset in his non-dominant left hand. Eric recounts:
“I was feeling kind of a weakness in my left hand. Obviously as a Firefighter you're using your hands all the time; you're picking up tools, picking up gurneys. You're constantly working with your hands. You're also working out all the time trying to stay fit. And because previously, as an athlete ... Everything I've done has been working out or trying to stay fit. You're pretty in tune to your body. So you know right away when something's not working right.”
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Before he was a trial participant, Eric shared how it feels to NurOwn was helping some people and ALS patients can't get to it:
“There's something out there that’s actually helping people and you can't get it. It's crazy. So I think after this appointment, we're gonna fight for that. The one guy who's getting it right now outside the trial was in a wheelchair and on a breathing machine. And since he's been getting the treatment, he's been able to stand on the wheelchair on his own; he's off the breathing machine and he’s able to ride a bike.... We don't have access. You don't have access to this treatment unless you're picked for the trial and then, even then, you don't know if you're actually getting it. It's already been through phase one; it's already been through phase two so they know it's safe for use and they know that it works.... Yet we can't get to it. ALS patients can't have it. I don't understand why we can't have access to these treatments. I understand that research has to be done. I respect the process but when you're dealing with a terminal diagnosis, why is it the same process as a treatment for say arthritis? ALS, it's a 100% chance that you're gonna die from ALS. That's fact. I don't think anyone is expecting to find this magic cure. I think people just want hope and they want a treatment. There's no cure for HIV. There's no cure for cancer. There's excellent treatment options, and I think with these treatments that are on the horizon and almost available, the people in the ALS Community just want access.”
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Ultimately, Eric was diagnosed in September 2019 and began the NurOwn trial shortly after diagnosis. Initially a fast progressor, Eric was losing almost 2 points per month on the 48-point scale, and he was on a 2-year trajectory to death or tracheostomy. On the day of his first EAP injection in March 2021, Eric’s baseline score was 37. At his third EAP dose, his score was 39. He had gained 2 points. Eric’s PT notes in May 2021 noted an improvement after just one dose in EAP:
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“Mr. Stevens is a 31 y.o. male who was diagnosed with ALS in August of 2019. Pt is currently participating in a NurOwn trial, which has a series of 3 injections. Pt received his first injection in March and since then, pt demonstrates improvement in strength, balance, and speech. His voice sounds louder and more clear. Pt Pt will be getting the second injection on May 25, 2021. Pt is not using an assistive device for mobility.”
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And again after the second dose, his PT documented more objective improvements!
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“Pt is participating in a NurOwn trial and received his second injection on May 25, 2021. Since his second injection, pt has maintained his strength since previous progress note, but has improved his balance significantly.”
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When he finished the second round of EAP in 2022, Eric’s ALSFRS-R score still remained a 34 on the 48- point scale. NurOwn helps Eric live longer and live better. Despite gaps in treatment,84 each time Eric received NurOwn, he halted his ongoing paralysis, regained some function, experienced improvement of his symptoms, and has benefited from “progression-free survival.”
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Eric was a fast progressor before NurOwn. He is a carrier of a CAMTA1 mutation that causes faster progression; he also had onset in two regions: upper limb and bulbar. Onset in 2 or more regions is also an indicator of faster progression. Before NurOwn, he lost 5 points in 4 months. This equates to 1.25 points per month.
His 3 trial doses of NurOwn ranged from February 2020 through June 2020. There was a 9-month gap between his last trial dose and doses 4-6 in EAP beginning in April 2021. Then again, there was a 9-month gap before he received doses 7-9 in EAP beginning in 2022. Eric has been unable to receive any more doses of NurOwn in the last 33 months. In total, Eric has missed over 20 doses in the every two-month dosing schedule. Eric’s wife Amanda was the one tracking his ALSFRS-R scores. During Round #2 of EAP, she was a new first-time mom, having just given birth to Peyton. She did not track his scores during the second round of EAP.
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During the NurOwn Phase 3, Eric’s progression came to a near screeching halt on NurOwn. His baseline score was 42 and it stabilized at 41. He only lost 1 point from baseline in the trial. His rate of progression slowed dramatically to 0.20 points per month. In the gap between the Phase 3 and EAP, it rebounded to 0.43 per month. Then with 3 more doses in the first round of EAP, it again slowed to 0.16 per month. It has never returned to the original fast progression.
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This was a large magnitude and immensely beneficial 1.05 point delta. But this classified him as a non- responder on the Primary Endpoint.
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Even though he was a fast progressor and had early bulbar symptoms, Eric didn’t start using a bi-pap for 38 months – this was 2.5x longer than average time-to-NIV in ALS natural history for fast progressors. As of June 2025, Eric has lived 75 months “trach-free” – more than 2.5x longer than ALS natural history.
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Eric’s Public Comment shared both clinical and real-world evidence demonstrating that NurOwn improved how he felt and functioned:
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“Even though I had upper limb onset, I was still able to use the dexterity of both hands to tie a bow, peel open a Reese’s peanut butter cup, turn pages in a book, use the TV remote, text, bathe, shave, and eat with a fork and spoon. I was eating a normal diet. My speech remained loud and clear. NurOwn also changed my symptoms (how I felt). Each time I got NurOwn, my fasciculations decreased and I had less painful cramping.”
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Eric and his wife Amanda (“Team Stevens”) have been fighting for changes in FDA’s policies for six years. In November 2019, the Daily Breeze published a story entitled: “Ex-NFL star Eric Stevens battles ALS and finds hope in a new stem cell-based treatment.” In it Eric pleaded for access:
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“When you get a terminal illness like this, obviously a cure would be the best case scenario. But what you really want is just a chance to fight it, a chance to live. Treatment is all we ask for. There’s a chance-for the first time ever, to help people with ALS.... 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.”
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In 2020, in her “Fight for Hope” TedTalk, Amanda Stevens posited a question: “At what point does the scientific method surpass human compassion, decency, and common sense?” In December of 2020, Team Stevens joined in publishing a video called “PALS: Counting the Days.” Although the NurOwn trial had just recently ended, Eric already suspected NurOwn had worked on him:
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“I don't know if I got placebo or the real stuff, because as you know it's a 50-50 chance of getting the actual drug. But I felt like my progression within that time slowed down. It's pretty scary, that feeling knowing that something was potentially helping you and now you can't get to it.”
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When asked what needs to change, Eric and Amanda responded about the need for a new pathway for terminal diseases so the FDA urgency matches the speed at which ALS is killing people.
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“A way to try to fix this is through policy change and you know right now a treatment for ALS, it goes through the same FDA pathway as medicine for arthritis, for a headache -- and this is a terminal disease. And even if a cure was found tomorrow, it would be years and years before Eric or any ALS patient would even see it.... “
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Accordingly, Team Stevens' family asked the FDA to act with urgency and treat ALS the same way that it treats other diseases -- similar to how the FDA rushed the approval of AZT for HIV in 1987; a cystic fibrosis drug in 2019; or the COVID vaccine in 2021. If the FDA can use the EUA pathway for COVID, a disease that, at the time, had a 2% case fatality rate, certainly it can use its regulatory flexibility for ALS, a disease with a 100% case fatality rate.
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The Stevens’ fight continued not just to change the approval pathway, but this time... just to be heard. In November of 2022, Stevens Nation issued a Press Release supporting Brainstorm's efforts to seek an Advisory Committee ("AdComm") meeting as they asserted: “the FDA's position ignores the vast evidence of efficacy and denies both the company's and patients' rights of due process.”
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Eric and his wife Amanda also spoke at the AdComm’s Open Public Hearing. Eric shared that he was working as a firefighter for the City of LA when he was diagnosed with ALS. In his testimony, Eric challenged the FDA and expounded on the firefighter’s credo that you “risk a lot to save a lot.”
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"As a firefighter, I took an oath to 'Protect and Serve.’ I laid my life on the line every day for others. I ran into burning buildings putting others' lives before mine. As doctors, you took a similar oath to "Do No Harm.’ I'm asking you to remember that oath, listen to my testimony and that of our neurologists. Then act with the same urgency as I did when I ran into a burning structure. I am not asking you to risk your life for me... like I did for others. I am simply asking you to not stand in the way of getting more of the drug that is helping me live.“
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Eric was diagnosed with ALS at just 28 years old – a few weeks after his wedding and honeymoon. Today, the father of two young kids, Eric knows NurOwn helps him “live longer and live better.” He is fighting for a chance to spend more time with his four-year old daughter Peyton and his one-year-old son Dean.