KANSAS CITY, Mo. — Sundays in the Nauser household are spent watching NFL football. Self-proclaimed sports-lover Sarah Nauser’s favorite point to bring up is her first-place fantasy football team in a league with her older brothers.
The 34-year-old credits newly approved Lou Gehrig’s disease drug AMX0035 with her participation in the league year after year.
“It’s huge. It’s more memories with family,” she said. “It’s just being here, being present, getting to live my life like every 34-year-old expects to do.”
The new drug, also called Relyvrio, is not a cure for ALS, but it targets motor neurons that patients typically lose as the disease progresses.
Nauser was diagnosed with ALS, which stands for amyotrophic lateral sclerosis, five years ago when she was 29 and working as a Kansas City, Missouri, police officer.
“It happened fast, I progressed fast within the first year,” she said. “I might have stood up, but I wasn’t really walking.”
She says she knew she wouldn’t qualify for the drug’s clinical trial because she uses a machine to breathe. But in 2020, Nauser obtained individual prescriptions for the two drugs used to create Relyvrio, which are approved individually, and began taking the drugs together.
Since starting that treatment, she has seen almost no progression in the disease over the past two years.
“If I don’t know, I’m going to find out. If there’s something I want to try, I’ll go to the end of the Earth to try it," Nauser said. "I’ve literally been to China and back just trying to get whatever treatment I could.”
Colleen Watcher, ALS Association executive director, says the association is currently funding 40 additional experimental treatments with donations from the Ice Bucket Challenge in 2014, which generated $115 million in total.
“The more drugs that we can get approved and that we can get made available quickly, we know will eventually make ALS a livable disease, which is our goal,” Wachter said.
For Nauser, the new drug has given her a future beyond the day-to-day.
“To see the disease slow down as much as it has, and all the life that it’s given me since that December when I started taking it, why can’t I live the next 10 years like this?” she said. “If nothing is progressing, I don’t see why not.”
Nauser and her husband have booked a cruise to Alaska next summer. She says her life is better than it has ever been.
