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OC Register: Mom with ALS hopes a groundbreaking UCI clinical trial will let her see her 2 kids grow up

April 12, 2018

IN THE NEWS: An Orange County Register article about a new clinical trial for ALS patients at UCI includes interviews with UCI Health neurologist Namita Goyal, MD, and ALS patient Lisa Wittenberg. The trial will hopefully determine whether an experimental stem cell-based treatment can slow, and potentially even stop, the progression of the disease.

Wittenberg describes her symptoms, the diagnosis and how she told her teenage boys about the disease:

Lisa Wittenberg says her “free fall” began about two years ago — in boot camp, with a box jump.

She did that jump just as she had a hundred times before.

Stood with her feet shoulder-width apart. Dropped into a quarter squat. Extended her hips, swung her arms, and pushed her feet through the floor to propel herself onto the box.

She felt a tiny tug in her lower back.

“It felt like a pulled or torn muscle,” she said.

It’s not easy for a doctor to tell patients they’re going to continue to gradually lose their muscle function — the ability to speak, swallow, or breathe.  Or that they might have just a few years left.

“The thing with ALS is, you feel helpless,” said Dr. Namita Goyal. “There’s no cure and no way to make it stop or slow down.”

ALS is a group of rare, neurological diseases that damage nerve cells that control voluntary muscle movement. The disease is “progressive,” which means the symptoms get worse over time, as Wittenberg experienced with her free fall.

With this disorder, nerve cells originating in the spinal cord degenerate or die. They stop sending messages to the muscles, which gradually weaken because they are not able to function.

“It’s been one of the most encouraging trials that we’ve ever seen,” said Goyal, who has done ALS research for a decade. “A majority of trials have stopped at the second phase, which means they were not effective.”

The trial is run by the UCI Alpha Stem Cell Clinic and sponsored by BrainstormCell Therapeutics.

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