Social Work Alum Stephanie Johnson has had a long career working in healthcare. After many years working as a medical social worker, she started her own consulting and coaching practice after her own transformational experience of seeking support from a life coach herself.
Fourteen years ago, healthcare and support became personal when her husband Rick developed Parkinson’s disease. Parkinson’s disease is the fastest growing and second most-common neurodegenerative disease. Currently, 21,000 Wisconsinites live with it. In December of 2023, Rick passed away and only three months later, Stephanie received a Parkinson’s diagnosis herself. Realizing that she and Rick were two of six people living in the same neighborhood with a Parkinson’s diagnosis she wondered if she was part of a disease cluster (a greater-than-expected number of disease cases grouped in a specific time and place).
Stephanie found that while 15 states have a Parkinson’s Disease Registry, Wisconsin is not one of them. She met with state legislators who have now introduced the Rick Johnson Parkinson’s Disease Registry. Dr, Brian Nagle, UW Health neurologist, who spoke in favor of creating the registry explained, “this will allow us to actually track the number of new cases and existing cases. It will also allow us to look for environmental risk factors, potentially genetic risk factors [and] track clinical outcomes,”
Note: This story is based on story by Spectrum News 1 on October 03, 2025.