Rally Held To Help Summit Mom Of 3 Get New ALS Treatment

SUMMIT, NJ – Friends of Summit mom Lisa Stockman-Mauriello held an outdoor rally on Sunday to push a pharmaceutical firm to approve her for a new ALS treatment so she can live long enough to see three upcoming milestones in her sons' lives.

Stockman-Mauriello found out recently that she's suffering from a rapidly progressing case amyotrophic lateral sclerosis — otherwise known as "Lou Gehrig's Disease." People diagnosed with the neuromuscular disorder rarely live beyond five years.

Stockman-Mauriello's husband told the Raleigh News & Observer last week that his wife noticed a hoarseness in her voice last August, then later had difficulty breathing. He now feeds her four times a day through a tube. She was diagnosed with a rare form of ALS only two months ago.

"Every week, I am rapidly declining from bulbar ALS," Stockman-Mauriello explained recently, "which is caused by a mutation to my SOD1 gene. A pharmaceutical company, Biogen, has a late-stage medicine called Tofersen, designed to treat people with this mutation. Unfortunately, they have denied my request, through my physician, to gain access for reasons that have not been explained."

She added, "My physician is one of the physicians participating in the trials for Tofersen, and he believes the drug may give me more time. And that is all I am asking for: time. My physician says that he has never seen an ALS case progress as rapidly as mine."

Her friends have asked people to sign a petition to help her gain access to the medication.

On Sunday, they rallied at Sweetbriar Road to push the Massachusetts-based pharmaceutical company to allow her access to its drug.

Three milestones

ALS attacks the nerve cells in the brain and the spinal cord. Only 10 percent of sufferers live more than 10 years, although some with a slow-moving form, like famed physicist Stephen Hawking, beat the odds and live decades.

Stockman-Mauriello explained on the top of her petition, "My three sons and my husband, Bob, are my life. My goals are modest and, I believe, realistic. I want to survive long enough to be here for three milestones: to see my oldest son, Scott, graduate from college in May, my youngest, Dean, graduate from the eighth grade, and my middle son, Luke, leave for college in September. We believe Tofersen gives us that hope."

More than 65,000 people had signed the petition as of Tuesday. The petition is here.

"I am begging Michel Vounatsos, Biogen's CEO, to give me the chance for more memories," she said. "Please grant me the Right to Try Tofersen. #tofersen4lisa"

Learn more about ALS here.

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