Summit Mom Of 3 Pleads For Access To New ALS Treatment

SUMMIT, NJ — Summit resident Lisa Stockman-Mauriello, a mother of three boys, found out recently that she's suffering from a rapidly progressing case of Lou Gehrig's Disease — and has been denied access to a medication in trials that's "designed to save the life of people like me," she says.

She's asking people to sign a petition to help her gain access to the medication.

Stockman-Mauriello said that her doctor is surprised by how quickly her amyotrophic lateral sclerosis — otherwise known as "Lou Gehrig's Disease" for the Yankees baseball legend — is progressing.

ALS is an often fatal neurodegenerative disease that 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 top of the petition, "I am a wife and mother of three beautiful sons, and I am fighting for my life and asking for your help. I've spent my 30-year career in the field of pharmaceutical healthcare communications, and now, ironically, I am fighting to get access to a medicine designed to save the life of people like me."

"Every week, I am rapidly declining from bulbar ALS," Stockman-Mauriello added, "which is caused by a mutation to my SOD1 gene. The pharmaceutical company, Biogen, has a late-stage medicine called Tofersen, which is 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. I'm losing function every week — but it is not too late — and getting access now can preserve my life."

One of her friends, a Hoboken mom, said, "We hope this petition will get Biogen to reconsider granting Lisa access to a drug that will give her the most precious gift of time with her family."

Three milestones coming up

Stockman-Mauriello said she wants to live at least long enough to celebrate three milestones that are coming up in the next six months.

"My three sons and my husband, Bob, are my life," she wrote. "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 27,000 people had signed the petition as of Tuesday. The petition is here.

Learn more about ALS here.

"Recently," Stockman-Mauriello noted, "I was able to travel to UNC (my own alma mater) to visit Scott. While there, we set up a ballroom to do a mother/son dance. I did a first dance with all three of my boys. I wish I could’ve frozen time in those moments, but at least they’ll always have those memories. I am begging Michel Vounatsos, Biogen's CEO, to give me the chance for more memories. Please grant me the Right to Try Tofersen. #tofersen4lisa"

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