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Help us Establish a Parkinson's Disease Registry in Wisconsin
Parkinson’s Disease is the fastest growing and second-most common neurogenerative disease with approximately 21,000 Wisconsinites living with Parkinson’s. Currently Wisconsin has no systematic way of tracking the incidence and prevalence of Parkinson’s but we can change that by passing legislation to create a powerful registry.
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By gathering comprehensive data on Parkinson's disease cases, registries can provide valuable insights into the disease's impact on different populations and potentially identify risk factors, ultimately leading to better treatment and care strategies.
In 2023, Stephanie Johnson lost her husband of 34 years, Rick Johnson. to Parkinson's disease (PD). She was his care partner for 13 years and shortly after Rick's death, she herself was diagnosed with PD. When Stephanie learned there was no systematic way of tracking the incidence and prevalence of PD in her state, she launched an effort to establish a PD Registry. Today, over 500 individuals and 15 organizations across Wisconsin are supporting the effort, including doctors, researchers, elected officials, patient advocacy groups and more.
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Why Wisconsin Needs a Parkinson's Disease Registry
Parkinson’s disease has a significant impact on individuals, families, and society. People living with Parkinson's often require caregivers as the disease progresses and hinders their ability to perform daily activities such as dressing, eating, and walking. As the fastest growing and 2nd most common neurodegenerative disease (behind Alzheimer's), the impact of Parkinson's disease is expected to grow significantly.
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A Parkinson's disease registry is crucial for several reasons: it helps track the prevalence and progression of the disease, informs public health planning, facilitates research, and aids in clinical trial recruitment. By gathering comprehensive data on Parkinson's disease cases, registries can provide valuable insights into the disease's impact on different populations and potentially identify risk factors, ultimately leading to better treatment and care strategies.
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When Wisconsin passes it's own legislation, we will join 15 other states in collecting health information about people living with Parkinson's in a way that supports patients' privacy and dignity and advances science and healthcare. In 1996, Nebraska created the country's first PD registry.
Rick Johnson Parkison's Disease Registry Bill
On October 1, 2025, Members of the newly created Parkinson’s Disease Alliance of Wisconsin were proud to join State Senator Rachel Cabral-Guevara (R-Appleton) and State Representative Lisa Subeck (D-Madison) as they introduced new powerful, bi-partisan legislation that would establish a Parkinson’s Disease Registry in Wisconsin. Now we need your help to encourage state legislators to support and co-sponsor the bill.
