Summit Mom Who Fought For Experimental ALS Treatment Passes Away

SUMMIT, NJ — Weeks after Summit mother of three Lisa Stockman-Mauriello, 52, finally got a dose of tofersen — a new treatment for ALS for which she had publicly fought — she has passed away.

Stockman-Mauriello's obituary in Friday's New York Times says, "Lisa has been recognized as a role model for working women because of her extraordinary work/life balance. She was a pioneer in remote work, in Chicago and then Charlotte ... We will forever remember her love of UNC ... and the way she made everyone she knew feel like their life was richer for having known her."

A year ago, Stockman-Mauriello started showing symptoms of a terminal illness. Once she was diagnosed with a fast moving version of ALS (Lou Gehrig's Disease) earlier this year, she and others rallied to get her experimental treatment, but the company did not approve her at first. READ MORE: Summit Mom Of 3 Pleads For Access To New ALS Treatment

Her case raised awareness of ALS and spurred national news coverage and discussions about who gets access to experimental drugs and trials.

This summer, the company making tofersen allowed doctors to apply to get it for their patients. Stockman-Mauriello got her first dose late last month, according to WPIX.

"Lisa Mauriello's eyes sparkled as she received her first dose of an experimental drug called Toferson," even though she could no longer speak, WPIX reported last month in a story here.

Organizers of a program she helped start at the University of North Carolina earlier this year raised awareness about the program, urging donors to select "Legacy for Lisa" in the drop-down menu. Her obituary encourages donations too. READ MORE: Program Seeks Donations In Honor Of Terminally Ill Summit Mom

Read Stockman-Mauriello's obituary here.

Read a writeup about Stockman-Mauriello in PR Week here.

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