Lisa Wittenberg, the ALS patient who became the face of a groundbreaking UCI clinical trial in Southern California, died Friday, Sept. 7 at Mission Hospital. She was 46.

Her husband, Joel Wittenberg, said the last few weeks had been torturous for his wife. She has had to use feeding tubes since July and has been on a number of pain medications, he said.

And three days before her death she couldn’t talk anymore.

“She couldn’t get one word out,” Wittenberg said. “That was the most frustrating thing for her – to not be able to communicate. She was in constant pain and agony. For me, it was hard to watch.”

Lisa Wittenberg’s health issues began in January 2017 when she started having back problems. It wasn’t until August 2017 when she came into Dr. Namita Goyal’s office at UC Irvine that she was handed the devastating diagnosis.

ALS, which stands for amyotrophic lateral sclerosis, is a group of rare, neurological diseases which damage nerve cells that control voluntary muscle movement. The disease is “progressive,” which means the symptoms get worse over time causing nerve cells to die. When these cells stop sending messages to the muscles, they weaken and lose function.

Wittenberg qualified for Brainstorm, a clinical trial that uses stem cells to treat degenerating nerve cells with a drug called NurOwn. She took three injections over 28 weeks. But, since this was a randomized, double-blinded study, Wittenberg did not know if she was getting the placebo or the real drug. And Wittenberg’s family will find out only after the trial is completed, about a year from now.

Mark Harrison, a Clovis resident with ALS, who was also part of the UCI clinical trial during the same time, died Aug. 31.

Still, the trial gave Lisa Wittenberg hope, which is scarce for ALS patients, her husband said.

“I think it’s criminal to give a placebo to terminally ill patients,” Joel Wittenberg said, echoing his wife’s opinion. “But this trial meant a lot to Lisa and it meant a lot to us because it was the only hope we had.”

Lisa Wittenberg told the Register that she was “fighting ALS” even though she’d been told that it wasn’t something she could fight.

She also served as an inspiration for many others who were stricken by ALS or those who had family members or friends with the disease. Her Facebook page was inundated with images of Wittenberg and messages of grief. Many talked about her cheerful demeanor, dazzling smile and positive attitude.

She was in this fight especially for her boys – Tommy, 17, and Andrew, 13 – her husband said.

Wittenberg said she didn’t even want to walk again, but hoped the trial might slow the disease’s rollercoaster-like progression, and give her a few more years with her sons.

Goyal said she knew “Lisa’s time was coming.”

“She was certainly an amazing fighter and remained optimistic the entire time I knew her,” she said. “Lisa and patients like her give me the inspiration to do what we do, and I will continue to fight for her.

“The day we find a cure and treatment for ALS, I’ll be thinking of Lisa.”

Lisa Wittenberg is survived by her husband, sons, mother Darlene VanDusen, sister Jennifer Heslar, nieces and nephews. A private funeral will be held. In lieu of flowers, the family asks that donations be made to the ALS Association’s Orange County chapter.