New Haven Register (New Haven, CT)
‘We have something that’s one of a kind’
Couple fighting her fatal disease together
CHESHIRE — Attorney Alexandra Cavaliere Gasser learned two months before marrying her law school sweetheart, Joe Gasser, that she had ALS, a progressive neuromuscular disease that is “100 percent fatal.”
Now, a year later, they still have the blissful aura of newlyweds, even as her condition deteriorates, requiring help with the basics of daily living such as turning in bed.
“We had a special relationship before the diagnosis, but I’d say now we have something that’s one of a kind,” she said. “He pretends to be stoic, he’s the
most empathetic and caring person I know.”
Alexandra Gasser has lost physical abilities — her speech is heavily slurred, she uses a walker, a scooter, her limbs are weak, she exhausts easily and becomes winded.
Joe Gasser, also an attorney, said that as the couple comes up on their one-year wedding anniversary, he’ll never forget the “sense of unreality” he felt being in the neurologist’s office with his thenfiancee as they were told she had a progressive neuromuscular disease, not yet identified as ALS.
“Alex’s disease and what we’ve gone through the last one-and-ahalf years has strengthened our relationship,” he said. “We’re always in each other’s corner and there’s nothing we can’t say to each other. We might be stronger as a couple.”
Amyotrophic Lateral Sclerosis — ALS, also known as Lou Gehrig’s disease — breaks down nerve cells, reducing the function of muscles. Ten percent of the cases are genetic and 90 percent, like Alexandra’s, are random. There is no cure and life expectancy is three to five years from the onset of symptoms. In the final stages, sufferers lose their ability to talk, chew, drink and breathe.
As the clock ticks, the couple is fighting desperately to get access to stage three clinical trial medication treatment through pending legislation. Alexandra Gasser doesn’t qualify for the trials, in part because of the amount of time since symptoms emerged.
The first symptoms of ALS
emerged in 2019 when she was on a work trip and noticed she was slurring “like I was a little drunk.”
A doctor did some diagnostics and told her there was nothing wrong and not to worry about it.
A nurse friend told her she should get a second opinion; by the end of January 2020 she knew it was a neuromuscular disease. In July 2020 it was confirmed ALS — by then she had leg weakness as well as slurred speech.
“ALS is terrifying,” she said. “Honestly, it’s a punch in the gut when you get told you have ALS. The disease is 100 percent fatal.”
The Gassers are realistic about the grim prognosis. And, as ALS acts uniquely in each victim, they have no idea what’s ahead.
They couple, as well as Alexandra Gasser’s mother, Lorri Cavaliere of Bethany, have lobbied heavily for Connecticut’s two U.S. senators to cosponsor the Accelerating Access to Critical Therapies for ALS Act, reintroduced by U.S. Sen. Chris Coons, D-Del.
If approved, the bipartisan bill would in part give Alexandra Gasser access to already FDA-approved therapies that have shown promise in halting ALS progression.
The couple got hopeful news this week when U.S. Sen. Richard Blumenthal, D-Conn., told the Register he would cosponsor the bill.
Blumenthal’s support will strengthen the bill in the Senate and increase its chances of coming up for a vote and being approved, Joe Gasser said.
“I will support the bill and I will do whatever I can to help pass it,” said Blumenthal, who is helping to lead efforts to put $200 million for ALS research in the next federal
budget.
U.S. Sen. Chris Murphy, DConn., who met remotely with the family recently, said he was looking at the obstacles.
In a statement, Murphy said he was “grateful I had a chance to meet with Alexandra and her family as they courageously fight against this terrible disease.”
“There are a number of barriers to accessing potentially lifesaving treatments such as those currently in clinical trials for ALS. …I’m working with my colleagues to find ways to lessen those obstacles while ensuring quality standards are in place,” Murphy said.
Alexandra Gasser said the hope is that treatment could halt the disease — or maybe even reverse some symptoms — so that she can live long enough for a treatment or cure to be found.
“I’m expecting the worst but hoping for the best,” she said. “I’m living my life like I only have a few
years left.”
The couple met on Sept. 18, 2014, at an orientation for the University of Connecticut School of Law, when they were among those assigned to carry an American flag at the event. They wound up standing next to each other.
“He was a handsome nerd who didn’t know he was handsome,” Alexandra Gasser said.
As for Joe Gasser’s future wife, she was downright irresistible.
“Alex was the most outspoken woman I met in my life. Her confidence and enthusiasm were something I couldn’t resist,” he said.
She became a corporate attorney who specializes in mergers and acquisitions, he a litigation attorney who works for the New Haven firm Jacobs & Dow.
Alexandra Gasser is still working — the disease leaves one’s mind fully intact — “But I’m winding down,” she said, because she can no longer write, as movement in her fingers and hands has deteriorated.
Her speech is increasingly slurred, making her difficult to understand — or as she puts it: “My voice has flatlined.” That means her ability to emphasize a point or express an emotion such as excitement are gone. The effort it takes to talk is exhausting and takes her breath away.
That ability to speak clearly is what she misses most, because she once was an expert at explaining complex concepts, she said.
“We do a good job with nonverbal communication,” Joe Gasser said.
Alexandra Gasser puts humor into the tragic situation every chance she gets, even poking fun at her limitations on Instagram.
“I wanted a place where I could talk about ALS without it being so depressing,” she said, noting she gets lots of comments on the social media page from people with and without ALS.
She’s also not holding any pity parties for herself.
“I’ve lived a life so fortunate. People wait their whole life to live the life I’ve had,” she said. “This disease has changed my whole perspective on life. It’s intensified every relationship that’s most important to me.”
She is known as a fiercely independent woman, so Joe Gasser knows not to run and help his wife to get up if she falls.
“So, he’d give me a little smile and say, ‘Let me know when you want help,’” she said. “He’s great at helping me feel independent.”
“Every time I saw her having difficulty I wanted to run over and solve it,” he said. “But you just let her know you’re there if she wants help.”
Alexandra Gasser knows what she can’t do. She can’t turn in bed without help, Joe does the cooking, she needs assistance with most every daily routine and is starting to have difficulty swallowing.
Alexandra Gasser said she’s disappointed they won’t have children, but it’s a decision they made, he said, because “they may not have very long with their mom, and that wasn’t a decision we want to make for them.”
The couple, married at Chatfield Hollow Inn in Killingworth, soon will celebrate her 30th birthday and their first wedding anniversary, and her birthday in Hawaii with family.
“I make the most of every day,” she said.