It has become a mortal race against time. The fight of her life. A plea to a big pharmaceutical company in Massachusetts for a treatment that could extend precious moments with the people she deeply loves.
But it began so simply. It started in one of those banal moments of life, part of the daily routine, that most us take for granted.
Lisa Stockman Mauriello was in her bathroom getting ready for her day last fall when she noticed something peculiar. She was drying her hair — or trying to. But she couldn’t lift her arm high enough to do it.
Something else: She was having a hard time raising her voice loud enough to call their dogs in to eat.
Odd, she thought.
She consulted with her primary care doctor, the first step in an urgent journey that has wound its way to specialists and through the offices of neurologists.
They checked for things like vertigo. But that wasn’t’ it. There were MRIs, a battery of tests, and then a stunning diagnosis.
“The neurologist said, ‘You actually have ALS,’ and she cried the whole way home,’' her husband, Bob Mauriello, told me the other day via video chat from his home in New Jersey. “She was hoping she wouldn’t crash driving over the George Washington Bridge on the way home.
“She got home and she just cried in the car for an hour because she couldn’t even get out of the car to tell me and the boys.’'
It was crushing news for her three sons who simply adore her: amyotrophic lateral sclerosis, or Lou Gehrig’s disease.
It was a devastating bulletin for Bob Mauriello who married the beautiful woman he had met when they both attended the University of North Carolina — a long time ago when they had common bonds in the classrooms and quadrangles at Chapel Hill.
He almost let her go when a friend — who would later become one of his groomsmen — asked whether if it would be OK if he asked out Lisa. “Sure, we’re not dating,’' he told him.
“And that night I couldn’t sleep’' Mauriello said. “I was tossing and turning. And the next morning the first thing I did was I called him and I said, ‘Why don’t you hold off on that. I’m actually going to ask her out.’ And that was almost 30 years ago.’'
What followed was the blessed rhythm of normalcy. A marriage. Careers. Children.
Lisa was a healthcare executive for nearly 30 years at Syneos Health, where she was an executive in charge of public relations, advertising and medical communications. Bob worked for Merrill Lynch, Bank of America and hedge funds before he switched careers. Since 2019, after getting a master’s degree in elementary education, he’s been a teacher. They are both 51.
A good life. Three kids. Two dogs. Soccer games. Track practices.
“I’m the president of the Lisa Stockman-Mauriello Fan Club because she had done some amazing things professionally,’' her husband said, his eyes welling with tears. “And if you ever want to feel good about yourself, tell people that you’re sick because the outpouring from folks who she has touched over the last 30 years is just really incredible.’'
When you’re told you have only a few months to live — when you’re told you have a particularly aggressive form of the disease — what do you do? Here’s what Lisa and Bob decided to do: They savored the little things in life. A strong marriage. Long-lasting love. The mileposts notched by their three kids, Scott, 22, Luke, 18, and Dean, 14.
Things like this: Deans’ soccer tournament victory. Luke’s great time — 4 minutes, 26 seconds — in a 1-mile race. Scott’s big job at a consulting firm.
“He’s going to be making more than his father now that I’ve gone into teaching,’' Bob said, flashing a wry smile.
But Lisa’s diagnosis is never far from their consciousness. And neither is her appeal to pharmaceutical giant Biogen, the Massachusetts company that has developed a late-stage medicine, tofersen, designed to treat people with the kind of ALS that Lisa has.
Tofersen has shown promise in significantly slowing the progression of the disease.
“There’s a process outside the drug trial where you can apply for something called ‘compassionate use’’ for people who are really progressing quickly and can’t wait for something to get approved,’' Bob Mauriello told me.
But that didn’t work.
In a statement, Biogen, said it is working as fast as it can.
“We share the urgent desire to bring new medicines to people suffering from ALS,’' the company said. “Obtaining approval for a new drug from regulatory authorities around the world is the fastest way to help the largest number of people with a specific disease.’'
The company said data from its most recent placebo-controlled study of tofersen are expected by summer.
“Providing individual access to tofersen at this time could jeopardize access to tofersen for hundreds of (ALS) patients by impeding our ability to complete the study and seek subsequent regulatory approvals,’' the company said
Lisa Stockman Mauriello and her advocates dispute that and are seeking swift action.
And that is why some 30 people gathered late Tuesday morning in Kendall Square for a peaceful march to Biogen’s headquarters in Cambridge.
They were advised to be polite and respectful — and to wear a mask.
They carried signs that read: “More Time 4 Lisa.’' And: “Biogen Grant Access.’'
Under a crystalline springtime sky, Lisa’s brother-in-law from Staten Island, Brian Farley, implored Biogen to help Lisa.
“Please, please find a way to make this happen,’' he said. “I know if you want to, you can find a way. I hope, in this building, we can find a way to save Lisa.’'
Then, as a guitar was strummed, the small crowd broke into a song made popular by Bill Withers.
“Lean on me when you’re not strong, and I’ll be your friend, I’ll help you carry on.
For it won’t be long, ‘til I’m gonna need somebody to lean on.’’
Kirsten Wolberg, a friend of Lisa and Bob now for more than 20 years, said she showed up on Tuesday morning to give voice to Lisa’s fight — a voice that Lisa has mostly lost.
“She didn’t set out to start a movement,’' Wolberg said. “She set out with the modest goals to live long enough to see her boys graduate from college, high school and eighth grade.
“Now it is clear that she isn’t just fighting for herself, she represents all 30,000 ALS patients and individuals stricken with rare, terminal diseases who are blocked by manufacturers and a structurally broken drug approval process.’'
In her own heartbreaking video plea to the pharmaceutical company, Lisa Stockman-Mauriello had issued an appeal in a labored voice.
“I know Biogen is trying to help patients,’' she said, her solemn husband by her side. “I just can’t wait for them to get through the big, long process. I need the drug now. I hope Biogen will help me live longer.’'
And so now, as a mortal clock counts down precious moments of her life, she waits.
Thomas Farragher is a Globe columnist. He can reached at firstname.lastname@example.org.