Accelerating Policy Impact: Establishing the West Virginia Parkinson’s Disease Registry

When longtime communications professional and TMG’s owner George Manahan was diagnosed with Parkinson’s disease at 49, he found himself navigating a healthcare landscape with few resources and little public awareness – particularly in West Virginia, which holds one of the nation’s highest prevalence rates of Parkinson’s. Rather than accept this status quo, George launched a grassroots movement to bring education, support, and visibility to the disease.

Over more than a decade, George and his team built a community infrastructure including weekly exercise classes, monthly support groups, statewide symposiums – and have raised over $600,000 through his annualFox Trot 5K event. But as the scope of Parkinson’s grew, George saw the need for systemic change and leadership.

Challenges

West Virginia has the third-highest percentage of people with Parkinson’s Disease (PD) in the United States. Despite this, no centralized system existed to collect data or inform care strategies. The state legislature had ruled out placing a registry within the Departments of Health or Human services (formerly DHHR), leaving a critical gap in ownership and implementation. A goal was set to create a Statewide Parkinson’s Disease Registry that would support research, improve care delivery, and inform public health strategies, all while navigating legislative limitations and time-sensitive opportunities. 

Approach

Successfully establishing a statewide Parkinson’s Disease (PD) Registry in West Virginia required more than just a sound public health proposal—it demanded strategic navigation of political, institutional, and legislative complexities, all under tight timelines.

1. Identifying the Right Partners

The first and most critical step was selecting stakeholders with the credibility, capacity, and influence to carry the initiative forward:

• Dr. Ali Rezai, a world-renowned neurosurgeon and leader at the WVU Rockefeller Neuroscience Institute (RNI), brought unparalleled institutional credibility and clinical expertise. His leadership positioned WVU as the natural home for a statewide PD registry.
• Charlie Roskovensky, legal counsel for the House Judiciary Committee, had a deep understanding of the legislative process and the ability to shepherd the proposal through political channels.

2. Framing the Registry as a Public Health Imperative

At the luncheon in December 2021, the vision for the registry was positioned not as a bureaucratic project, but as a strategic public health solution:

• Emphasized West Virginia’s ranking as the third highest PD prevalence state in the nation.
• Highlighted the lack of centralized data, which hinders research, healthcare planning, and support services.
• Pointed to successes in other states, showing that a registry can guide smarter resource allocation and improved patient outcomes.

This messaging helped unify clinical and legislative stakeholders around a shared goal, while sidestepping potential partisanship.

3. Leveraging National Resources to Streamline the Legislative Process

To fast-track action, a sample legislative framework from The Michael J. Fox Foundation was provided. This model legislation:

• Reduced the drafting burden on legislative staff
• Ensured alignment with best practices and national registry standards
• Provided legal language that had already been successfully introduced or passed in other states

This tactical move demonstrated preparedness and professionalism, removing friction and instilling confidence among decision-makers.

4. Strategically Selecting WVU RNI as the Managing Entity

A pivotal moment came when Dr. Rezai agreed to have WVU RNI serve as the managing institution for the registry.

This decision addressed a major legislative roadblock: the clear directive that the registry NOT be housed under the Departments of Health or Human Services (formerly DHHR). With WVU RNI as the only viable and politically acceptable option, this agreement created a path forward for legislative sponsorship and bipartisan support.

5. Timing the Legislative Push

The final component of the strategy was timing:

• The luncheon occurred just weeks before the 2022 legislative session, allowing the team to strike while the issue was top of mind.
• Charlie Roskovensky committed to moving quickly on drafting the bill and lining up support, creating momentum before the session officially opened.
• By aligning all stakeholders before the session began, the bill entered the legislative process with built-in support and clarity—a major reason it passed in only 29 days.

Execution

• Bill Drafted: January 2022 legislative session
• Bipartisan Support Garnered: Demonstrated urgency and public health value
• Legislation Passed: In just 29 days
• Signed into Law: By Governor Jim Justice, April 2022

 Results

• West Virginia became the 3rd U.S. State to establish a Statewide Parkinson’s Disease Registry
• WVU RNI was positioned as a data and research hub for neurodegenerative diseases
• The efforts aligned West Virginia with national leaders in PD policy and innovation

To learn more about Parkinson’s Disease research, visit michaeljfox.org.