CHESHIRE – “My mom, like, you can’t get a better mom and advocate,” says Alex Gasser, holding her mother’s hand tight, as she recalls the devastating diagnosis that turned her life upside down.
“I don’t often do things by myself anymore,” says Alex, who, out of the blue, noticed sudden slurred speech in 2019.
After one year and many appointments, this smart, vibrant young lawyer found out she had ALS, Lou Gehrig’s Disease.
“It was really tough,” says Alex.
“The worst thing you could ever experience. The worst thing in the world.” says mom Lorri Cavaliere of Bethany.
In the last 12 months, the newly married woman’s condition has rapidly deteriorated. Now 29, she uses a walker while having trouble talking and eating.
“She’s a giver, she’s worked hard,” says Lorri who is raising awareness of a bill – S. 1813 – asking for help including research grants and expanded access, allowing some ALS patients to use drugs in Phase 3 clinical trials.
“She’s not getting the support she needs here in Connecticut,” says Lorri, noting that Senators Chris Murphy and Richard Blumenthal haven’t sponsored the bill.
She recently sent a letter to Sen. Murphy, a member of the Senate Health Committee, stating: “…Alex will die if she cannot get access to investigational drugs…”
In response to our request for comment, Senator Murphy issued this statement:
“I can’t imagine the pain of seeing your child battle ALS, and my heart goes out to Alexandra in her courageous fight against this disease. As a member of the Senate Health, Education, Labor and Pensions Committee, I’m working with my colleagues to make sure that lifesaving treatments get urgent, high level of consideration by the Food and Drug Administration while ensuring quality standards are in place.”
“I’m more sad about what I’m leaving behind,” says Alex.
It’s not death that scares her. Instead, she worries about her loved ones.
“I don’t want them to have to watch that,” she says.
“You want to scream, you know? It’s my girl. If I could, I’d take it, take it all from her,” says Lorri with tears in her eyes, a daily occurrence.
Alex won’t let this grueling, cruel disease rob her of everything. Instead, she chooses to live in the moment, enjoying every second with her beloved siblings and dogs, fighting time with a lasting spirit.
“I try to focus not on what I lost but on what I gained,” she says. “I try to hold onto that because what else are you going to do?”
Senator Blumenthal issued the following statement:
“I am committed to seeing an end to ALS in our lifetime. The federal government must continue to commit significant and substantial financial and scientific resources to find a cure to ALS. This is why I recently called for over $200 million in ALS research funding as part of next year’s federal budget. It is critical that as new therapies are researched and developed, they receive speedy, yet thorough, FDA review to ensure that they are both safe and effective. I will continue to support efforts that advance access to new therapies through FDA’s drug approval process in a way that preserves patient safety and reviews effectiveness.”
But the Cavaliere’s say time is running out for Alex and many others and they’ll continue to pray for a miracle.