Thousand Oaks parents hope to raise money for treatment for son's rare disease

Tuesday, December 2, 2025
THOUSAND OAKS, Calif. (KABC) -- After Black Friday and Cyber Monday comes Giving Tuesday, when we're all encouraged to do something for someone else-- someone like 8-year-old Aiden Steiner of Thousand Oaks, and other children like him who are struggling with an extremely rare disease.

Steiner loves the same things most kids his age do, but behind his smile is a devastating diagnosis: Infantile Neuroaxonal Dystrophy, or INAD, a rare and terminal disease.

"Basically, it's pediatric ALS and Parkinson's combined. It's the worst-case outcome that we could have," said Aiden's mother, Dana Steiner.

Experts say there are fewer than 300 children living with the illness worldwide. Aiden's parents believe he is the only known case in Southern California.

He suffered through unexplained falls, balance problems and a misdiagnosis of autism until he was diagnosed last year.



"Because of this later onset and the adolescent version, potentially, it could give us five-ish more years, but realistically, it's the same outcome where kids slowly lose their mobility. They will slowly lose their ability to speak, to eat," Dana said.

"Whenever someone gets a chance to meet Aiden, they fall in love with him, but I think he falls in love harder," said Aiden's father, Marc Steiner.

Aiden's parents decided to act and launched a nonprofit, the AJS Foundation.

More than $400,000 has already been raised to help the INADcure Foundation work on what could be the first-ever gene therapy.

"Basically, it's injecting the correct copy of the gene into the brain and into the spinal fluid and replacing the bad copies," Dana said.



That therapy could be ready by early next year, but the clock is ticking. Researchers need another $2 million to move forward with clinical trials that could treat up to ten children, including Aiden.

On Giving Tuesday this year, the family hopes they can get money to help all of the kids. Interested donors can visit aidensateam.com.

"There are no doctors on the West Coast that are really prominent in this field. Right now, the INADcure Foundation, which is the larger organization that we are supporting, is run out of New Jersey," Dana said.

As the Steiner Family continues their fight, they say they're fueled by hope and the support of a community determined to help give Aiden more time.
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