top of page

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.

​

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.

556896192_122132732918940366_8402556014127652580_n.jpg

Our Mission

Rooted in lived experience and driven by community, the Parkinson's Disease Alliance of Wisconsin advocates for the policies and systems that improve life for every Wisconsinite touched by Parkinson's disease. At the heart of our work is a commitment to establishing a statewide Parkinson's Disease Registry — building the foundation of data, equity, and accountability that Wisconsin needs to meet the growing impact of this disease.

Our Vision

I'm a paragraph. Click here to add your own text and edit me. It's easy.

We envision a Wisconsin where public policy reflects the real needs of people living with Parkinson’s disease, where equitable access to care and support is protected and strengthened through strong advocacy, and where individuals and families are empowered to influence the decisions that affect their lives. We strive for a future in which systems of care are responsive, inclusive, and driven by the voices of the Parkinson’s community.

Our Values

  • Compassion: We lead with empathy, honoring the lived experiences of individuals and families affected by Parkinson’s disease.

  • Collaboration:  We believe meaningful progress happens through partnership — with healthcare providers, community organizations, caregivers, researchers, and those living with Parkinson’s.

  • Integrity:  We uphold transparency, accountability, and ethical stewardship in all recommendations and actions.

  • Equity & Access:  We are committed to reducing barriers to care and ensuring inclusive access to resources across geographic, economic, and cultural communities throughout Wisconsin.

  • Innovation & Excellence:  We support forward-thinking solutions, evidence-based programming, and continuous improvement to meet the evolving needs of our community.

  • Advocacy & Empowerment:  We amplify voices, promote awareness, and empower individuals and families to navigate Parkinson's with knowledge and confidence. 

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.

Steph_Rick_JPG.avif
PD Alliance Bill Fact Sheet October 2025 (2).png

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.

​

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. 

​

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.

Polly Dawkins, The Davis Phinney Foundation Executive Director

"The Davis Phinney Foundation strongly supports the creation of a Wisconsin Parkinson’s Disease Registry. By gathering accurate statewide data, the Registry will give researchers, clinicians, and policymakers the information they need to improve care and resources—ultimately helping people with Parkinson’s and their families live well today."

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.

As of January 28, 2026, the following state legislators have signed up to co-sponsor and suppor this bill:

​

Press Coverage

Connect with Us

(608) 492-003

info@pdalliancewi.org

  • Instagram
  • Facebook
  • LinkedIn

Thanks for submitting!

Our Advisory Council

  • Mary Borland, Madison

  • Paula Carrier, Edgerton

  • Mary Lou Clayton, Brooklyn

  • Richard Jones, Fitchburg

  • Maureen Kartheiser, Shorewood

  • Harold (Hal) Menéndez, Madison

  • Dacy Reimer, Campbellsport

  • Denise Runde, Madison

  • Judy Schultz, Madison

  • Connie Udell, Janesville

  • Kathy Werner, Verona

PD Alliance WI Logos (3).png
  • Instagram
  • Facebook
  • LinkedIn
bottom of page