By Laura Anne Bird | Photography by Hillary Schave
Stephanie Johnson remembers how much she and her husband, Rick, savored their marriage. Travel, food, wine, family — they enjoyed it all. But Johnson began noticing changes in Rick.
“He developed a slumped posture, shuffling gait, masked facial expression, and increased anxiety and depression,” she says. Her career in health care led her to suspect that something neurological was at play, and in 2010, Rick was diagnosed with Parkinson’s disease.
Rick’s disease progressed, and he passed away in December 2023. At the same time, Johnson herself developed a quivering sensation on her right side. More symptoms emerged, and three months after Rick’s death, she was diagnosed with Parkinson’s.
Johnson’s dismay was compounded when four other people from their former southwest-Madison neighborhood were diagnosed as well. She contacted local and state public health departments to request an investigation into what she viewed as a potential disease cluster.
“But I found out that our state [unlike 15 others] did not have a Parkinson’s disease registry, so there was no systematic, accurate way of understanding exactly how many Wisconsinites live with Parkinson’s.”
Johnson connected with the Michael J. Fox Foundation, which supports states working to establish registries. She also met with state legislators from both sides of the aisle, who introduced the Rick Johnson Parkinson’s Disease Registry in October. Housed at the University of Wisconsin School of Medicine and Public Health, the registry will collect critical data such as environmental and genetic risk factors. Johnson hopes the legislation will be signed into law in 2026.
With key administrative support in place — thanks to the Parkinson’s Disease Alliance of Wisconsin that Johnson founded last summer — she aims to intensify her efforts in policy and advocacy, including creating a Parkinson’s Disease Advisory Council and organizing a Parkinson’s Disease Registry Summit.
“I’m thankful for every day I can make a meaningful difference,” says Johnson.
How do you define impact — and what does it look like in your work?
“My work with Parkinson’s disease registries has helped me move through my grief. I feel a profound sense of meaning and purpose in my advocacy efforts — both in honoring my late husband and in contributing to the greater good.”
