When Stacy Clauss began noticing weakness in her right shoulder in 2019, she thought it was a simple injury—maybe a torn rotator cuff. What followed was a long, winding road of tests, surgeries, and frustration. X-rays, MRIs, physical therapy, and even cervical spine surgery failed to improve her symptoms. Instead, they worsened.
Over two and a half years, Stacy endured multiple EMGs and countless appointments, only to receive many misdiagnoses along the way. In July 2021, she finally got the answer: She had ALS. She was just 48 years old.
“It’s a nightmare getting diagnosed,” she recalls. “When you finally do, there’s shock, but also relief. You know what you’re dealing with. But then the doctors told me I had two to four years—that was an out-of-body experience.”
“I remember being diagnosed, and thinking that I would never live to see my daughters get married,” she says.
Now 52, Stacy has outlived the initial prognosis by more than two years. She still talks, swallows, and breathes on her own, though both arms are now unusable. This year her legs started to weaken and in April 2025, Stacy has had several falls, some of which resulted in visits to the ER and injuries, including a fractured shoulder. Prior to the falls, Stacy was using a rolling walker but she is now wheelchair-bound (she can still stand to pivot transfer).
Last September, one of her daughters got married. Stacy was there to walk her down the aisle and actually got to dance at the reception! “I danced the night away,” she remembers. “It was awesome. It was probably the last time I will ever do that, but I’ll take it.”
Finding the Right Fit in Treatment
From the beginning, Stacy prioritized quality of life. She turned down infusion-based treatments like Relyvrio because she didn’t want to be tied to a medical schedule that would take away from the life she wanted to live.
That’s why she was so thankful to learn her ALS clinic, Penn State Hershey, was also a research site for an Expanded Access Program (EAP) run by Clene, offering a gold nanomedicine oral suspension. On October 25, 2023, she started taking the medication daily.
Because she joined through an EAP, there was no placebo—just access to a treatment already showing promise in clinical trials. Every few months, she completes assessments, bloodwork, and ALS-FRS (functional rating scale) evaluations to measure her speech, swallowing, mobility, and respiratory function.
A Purpose Beyond the Treatment
For Stacy, participating in the EAP is about more than her own health. “I wanted to contribute to science and research,” she says. “Even if I never see a cure, my data could help future generations.”
She’s grateful the medication has come without noticeable side effects and believes it may be helping to slow her disease progression. But she’s equally passionate about the bigger picture: making these expanded access programs accessible to everyone, not just those near research hospitals.
“No one should be left behind because of where they live,” she says. “If researchers need real-world data, they need real people—and that means making access possible for everyone living with ALS.”
Stacy spent her career as a medical social worker, helping older adults transition to new levels of care. When ALS forced her to retire in 2022, she struggled with losing that professional role. But she’s found new ways to give back: through her participation in the EAP and by becoming involved in support groups. She even plans to become a peer mentor with I AM ALS to help support others facing the disease. Because real life stories matter, and need to be heard by others—including our legislators—to fully understand the complexities of how this disease impacts individuals and their families, Stacy recently started her own blog to document her journey with ALS: https://dancingwithalsandlife.blogspot.com/.
A Message to Lawmakers
Stacy’s call to policymakers is clear: fund Expanded Access Programs. “These are life-changing,” she says. “They give people like me hope, purpose, and time. And they help scientists find answers faster. This is not wasted funding—it’s an investment in life.”