Former NFL star hanging on, helping others despite grim ALS diagnosis

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.