Parkinson's Policy Podcast

Parkinson's Policy Podcast: Israel Robledo

Patient engagement isn't just a checkbox, it's an essential component of impactful health policy and effective clinical research. In our latest episode of the Parkinson's Policy Podcast, we interviewed Israel Robledo, a prominent advocate and veteran clinical trial participant who has devoted years to bridging the gap between patient communities, research institutions, and policymakers. Key takeaways from our conversation: - How patient advisory boards improve trial recruitment and retention. - Translating daily living challenges into actionable policy priorities. - Expanding outreach to underserved populations in the Parkinson's community. Israel shares his journey of turning a diagnosis into action, from representing patients in research design to advocating for legislative change that impacts millions.

• Transcript

Parkinson's Policy Update: Dr. Alice Chen-Plotkin

What does the National Plan to End Parkinson’s Act mean for research, clinical care, and patient outcomes? We’re joined by Dr. Alice Chen-Plotkin, a leading physician-scientist and non-federal public member on the newly formed federal Advisory Council on Parkinson's Research, Care, and Services. Dr. Chen-Plotkin breaks down the Council's vital mission to advise the Secretary of Health and Human Services, the cutting-edge science behind Parkinson's biomarkers, and how national strategy can translate into real-world impact for individuals and families living with Parkinson’s today. Listen, like, and subscribe for more conversations driving Parkinson's advocacy forward!

• Transcript

Parkinson's Policy Podcast: Dr. Deborah Cory-Slechta

Is the rising incidence of Parkinson’s disease connected to the chemicals in our environment? In this episode of the Parkinson’s Policy Podcast, we sit down with the renowned Dr. Deborah Cory-Slechta, Professor of Environmental Medicine, Pediatrics, and Neuroscience at the University of Rochester Medical Center. Dr. Cory-Slechta breaks down decades of pioneering research into how environmental exposures including agricultural pesticides like Paraquat, industrial solvents, heavy metals, and fine particulate air pollution impact dopamine neurons and elevate the risk of neurodegenerative diseases. We also discuss critical gaps in regulatory policy, environmental justice concerns, and actionable steps needed to protect public health.

• Transcript

Parkinson's Policy Podcast: Rep. Jennifer O'Mara

In this episode of the Parkinson’s Policy Podcast, we sit down with Pennsylvania State Representative Jennifer O’Mara (PA HD-165) to explore key policy pathways for supporting the Parkinson’s community. From capitol halls to local communities, we examine how legislative action can transform research and expand healthcare access. We discuss how lawmakers can build cross-party coalitions to prioritize sustained funding for Parkinson’s research, caregiver support, and community services. We also chat about specific policy tools and state-level strategies Pennsylvania can leverage to ensure equitable access to specialist care, movement disorder neurologists, and telehealth services across both rural regions and urban centers.

• Transcript

Parkinson's Policy Podcast: Rep. Valerie Gaydos

In this powerful episode of the Parkinson’s Policy Podcast, we are joined by Pennsylvania State Representative Valerie Gaydos. Rep. Gaydos brings a deeply personal perspective to health policy: her late mother, Martha, battled Parkinson’s disease for over 15 years. Today, Rep. Gaydos is channeling that experience into legislative leadership as a strong voice in the push to ban paraquat, a toxic herbicide linked by scientific research to an increased risk of Parkinson’s disease. We dive into how state-level policies can address environmental risk factors, how lawmakers and advocacy organizations can build effective coalitions, and what everyday constituents can do to move the needle toward better care and an eventual cure.

• Transcript

Parkinson's Policy Podcast: PMD Alliance

In this episode of the Parkinson's Policy Podcast, we sit down with two incredible leaders from the Parkinson & Movement Disorder Alliance (PMD Alliance): Dr. Kelly Papesh (Clinical Director) and Rebecca Korduner (Chief Strategy Officer & Deputy CEO). PMD Alliance is shaking up how we think about movement disorders by focusing on the entire ecosystem: patients, care partners, and medical professionals alike. Join us as we dive into how PMD Alliance ensures advocacy efforts reflect diverse patient experiences across age, race, and geography, and the major policy and advocacy shifts needed to improve quality of life for the movement disorder community. Whether you are a person living with Parkinson's, a care partner, or a healthcare provider, this conversation offers invaluable insights into the future of care and community support.

• Transcript

Parkinson's Policy Podcast: Dr. Ray Dorsey and Dr. Michael Okun

In this powerful episode of the Parkinson's Policy Podcast, hosts Margaret Preston and George Ackerman sit down with two of the world’s foremost neurologists and advocates, Dr. Michael S. Okun and Dr. Ray Dorsey, co-authors of Ending Parkinson's Disease and The Parkinson's Plan. Parkinson’s is currently the world’s fastest-growing neurological disorder; a rapid rise driven not primarily by genetics or aging, but by widespread exposure to environmental toxicants. In this conversation, Drs. Okun and Dorsey unpack: The Invisible Culprits: How pervasive environmental chemicals, such as the pesticide paraquat, the industrial solvent trichloroethylene (TCE), and airborne pollutants, silently damage brain cells and elevate Parkinson’s risk. The Legislative & Advocacy Agenda: Why immediate policy action, federal (and state) chemical bans, EPA accountability, and increased NIH research funding are critical to curbing the epidemic. Empowered Action: Practical, daily steps individuals and communities can take to reduce exposure through water filtration, safer produce, and cleaner air while demanding systemic change. This urgent, eye-opening discussion serves as both a wake-up call and a actionable framework for policy leaders, advocates, and families working toward a world where Parkinson's disease is rare.

• Transcript

Parkinson's Policy Podcast: Senator Alexis Calatayud

In this episode of the Parkinson’s Policy Podcast, we sit down with Florida State Senator Alexis Calatayud (District 38) to discuss a massive, historic legislative victory for the neurodegenerative disease community. Senator Calatayud championed SB 1800 (The Parkinson's Disease Research Act), a landmark piece of legislation that passed alongside its companion House bill to officially establish the Consortium for Parkinson's Disease Research within the University of South Florida. This historic package brings together public and private state universities, researchers, and academic medical centers into a collaborative powerhouse. By pooling resources and medical expertise, Florida is firmly establishing itself as a premier national hub for neurodegenerative health, innovative therapies, and the ongoing fight for a cure. In this episode, we discuss: - The inspiration behind SB 1800 and what it took to build bipartisan momentum. - How the new Consortium will transform medical research, study genetic origins, and accelerate therapeutic treatments. - The critical inclusion of research regarding Parkinson's prevalence among first responders. - What this massive win means for Florida patients, caregivers, and the future of healthcare policy. Connect with Senator Alexis Calatayud - Website: https://www.flsenate.gov/Senators/S38 - Instagram: @Alexis_Calatayud

• Transcript

Parkinson's Policy Podcast: Jessi Keavney

In this episode of the Parkinson’s Policy Podcast, we sit down with Jessi Keavney, a dedicated Parkinson's advocate and member of the National Council. Jessie shares her powerful perspective on the current landscape of policy advocacy, and the critical importance of community engagement in driving legislative change. Tune in to hear her insights on what the future holds for Parkinson's research, care access, and policy reform. In this video, we cover: - Jessie’s personal journey in carrying pathogenic Parkinson’s genes and her path to becoming a policy advocate. - The current legislative priorities for the Parkinson's community. - How individuals and families can get involved in advocacy and policy work.

• Transcript

Parkinson's Policy Podcast: Inaugural National Council Meeting Debrief

The first ever meeting of the federal Advisory Council on Parkinson's Research, Care, and Services was recently held to guide the National Plan to End Parkinson's. The council's goals are to improve Parkinson's disease diagnosis, prevent the disease, and support care partners. Advocacy groups are pushing for fast action. We give our recap of this important discussion.

• Transcript

Parkinson's Policy Podcast: Del. Richard "Rip" Sullivan

In this heartfelt episode of the Parkinson’s Policy Podcast, we sit down with Del. Richard Sullivan to discuss Virginia’s proposed paraquat legislation, HB1375, and the growing movement to address environmental factors connected to Parkinson’s disease. Delegate Sullivan shares why the bill — which would ban paraquat use in Virginia — was introduced, what happened during the legislative session, and why the measure was ultimately tabled until next year. Beyond policy, this conversation becomes deeply personal. Delegate Sullivan opens up about his wife, Beth, and her journey with Parkinson’s Disease, offering a moving perspective on how this issue affects families across Virginia and beyond. We also discuss the significance of securing April 11th as World Parkinson’s Day in Virginia and why recognition and awareness matter in the fight for better treatment, research, and prevention. This episode is dedicated to Beth — and to every family navigating Parkinson’s disease with courage and resilience. Topics covered in this episode: • HB1375 and the effort to ban paraquat in Virginia • The connection between environmental exposure and Parkinson’s disease • The legislative process and what comes next for the bill • The importance of World Parkinson’s Day recognition in Virginia • Personal reflections from Delegate Sullivan If you enjoyed this conversation, please like, subscribe, and share to help raise awareness about Parkinson’s policy, advocacy, and research.

• Transcript

Parkinson's Policy Podcast: Dan Feehan from Michael J. Fox Foundation

What does it take to turn scientific breakthroughs into accessible, life-changing treatments for the millions of families affected by Parkinson’s disease? In this episode of the Parkinson's Policy Podcast, we sit down with Dan Feehan, Chief Policy and Government Affairs Officer at The Michael J. Fox Foundation (MJFF), to pull back the curtain on the legislative fights and advocacy efforts shaping the future of Parkinson's care and research. Dan breaks down the foundation's current strategic priorities, how a unified advocate voice brings humanity to Capitol Hill, and what needs to happen next to turn discoveries into a cure. What We Discuss in This Episode: The Race to $600 Million: Why securing robust, bipartisan federal funding at the National Institutes of Health (NIH) is critical to keeping the momentum of current scientific breakthroughs alive. The Fight Against Environmental Toxins: Dan shares insight into statewide bans on paraquat—a highly toxic herbicide linked to a doubled risk of Parkinson's—and what these bills would mean for a nationwide EPA ban. The National Parkinson’s Project: How the foundation is pushing for the full implementation of this whole-of-government initiative to revolutionize diagnosis, prevention, and treatment. The Power of Grassroots Advocacy: How everyday patients, care partners, and family members can effectively engage with lawmakers to demand measurable action. If you’ve ever wondered how policy directly impacts the search for a cure, this deep dive is a must-watch.

• Transcript

Parkinson's Policy Podcast: Dr. Sara Whittingham

“Oh crap.” 😮 It’s the unfiltered thought so many people have after a diagnosis, and it’s exactly why Dr. Sara Whittingham used it to title her incredible book, Oh Crap! It's Parkinson's: A Rebel's Guide to Taking Back Control of Your Life. We recently interviewed Sara on the Parkinson’s Policy Podcast, and her energy is absolutely infectious! As an Air Force veteran, M.D., mom, and Ironman triathlete living with PD, Sara is a force of nature. In this episode, we talk about: Shifting the mindset from "patient" to "person with agency." The power of finding your "outrageous goals" and purpose. How she’s taking the rebel fight all the way to Washington, D.C., to advocate for better care and research. If you or a loved one are navigating this journey, Sara’s blend of medical insight, lived experience, and grit is exactly what you need to hear today.

• Transcript

Parkinson’s Policy Podcast Episode 8: Anne Hubbard (APDA)

In this episode of the Parkinson’s Policy Podcast, we sit down with Anne Hubbard, Chief Public Policy Officer to discuss the latest policy issues impacting the Parkinson’s community. From advocacy priorities and healthcare access to ongoing legislative efforts, Anne shares insights into how policy can shape better outcomes for people living with Parkinson’s and their families. Tune in for an informative conversation on the work being done to advance support, research, and patient-centered care.

• Transcript

Vermont! First State to Pass Ban on Parkinson's-Linked Pesticide Paraquat

In this episode of the Parkinson’s Policy Podcast, we sit down with Representative Brian Cina, a Vermont legislator and sponsor of the bill to ban paraquat, a widely used herbicide linked to Parkinson’s disease and other serious health concerns. We discuss the growing body of research connecting environmental toxins to Parkinson’s, the policy efforts underway in Vermont, and why advocates, scientists, patients, and lawmakers are pushing for stronger protections against harmful chemical exposure. Rep. Cina shares insights into the legislative process, the challenges of advancing environmental health policy, and why public awareness and grassroots advocacy matter. This conversation highlights the intersection of science, public health, and policy—and the importance of taking action to reduce exposure to potentially dangerous environmental chemicals.

• Transcript

Parkinson’s Policy Podcast Episode 7: Deborah Swerdlow & Ken Chason (Parkinson's Foundation)

In this episode of the Parkinson’s Policy Podcast, we sit down with Deborah Swerdlow, Head of Policy at the Parkinson’s Foundation, and Ken Chason, a dedicated patient advocate and member of the Foundation’s Patient Policy Advisory Council (PPAC), for a timely and insightful conversation on the future of Parkinson’s policy. Together, we explore the most pressing policy challenges impacting the Parkinson’s community today, from access to care and affordability of treatments to the need for increased research funding and stronger support systems for patients and caregivers. Deborah shares an inside look at how policy priorities are shaped at the Foundation, while Ken brings a powerful, lived-experience perspective on why patient voices must remain central to policymaking. We also dive into what needs to happen next at both the state and federal levels to drive meaningful change, highlighting opportunities for advocacy and ways listeners can get involved. Whether you’re living with Parkinson’s, caring for someone who is, or working in healthcare, policy, or advocacy, this episode offers valuable insights into how policy decisions shape real-world outcomes, and how you can be part of the solution. More information for on the Parkinson’s Foundation’s policy work can be found here: https://www.parkinson.org/how-to-help/policy-advocacy-priorities

• Transcript

Parkinson’s Policy Podcast Episode 6: Representative Hogan

In this episode of our Parkinson’s Policy Podcast, we sit down with Rep. Hogan of Pennsylvania to discuss HB1135, a bill aimed at prohibiting the use of paraquat, a widely debated herbicide linked to increased Parkinson’s risk. We explore the science behind paraquat, why this legislation matters for public health, and how advocates and constituents can effectively mobilize support. Rep. Hogan shares insights on the policymaking process and practical ways listeners can get involved in pushing for meaningful change.

Parkinson's Policy Podcast Episode 5: Geoff Horsfield (Environmental Working Group)

In this episode of the Parkinson’s Policy Podcast, we speak with Geoff Horsfield, Legislative Director at the Environmental Working Group. Together, we explore the herbicide paraquat and its emerging connection to Parkinson’s Disease. Geoff breaks down the latest policy developments, the science behind paraquat exposure, and why this issue is gaining national attention. We also discuss what constituents can do to advocate for change, including practical strategies for engaging with lawmakers and making their voices heard. Whether you're directly impacted by Parkinson’s or interested in environmental health policy, this episode provides actionable insights and guidance on how to drive meaningful advocacy. Contact geoff.horsfield@ewg.org to get involved or ask questions The Paraquat Resource Library that the EWG has put together: https://docs.google.com/document/d/1N3W5H9vpUvpFtk6iLmdwfcJ5xroTJBiW_pr3LblsxVg/edit?tab=t.0#heading=h.7iu5y1z4k82f

Parkinson’s Policy Podcast Episode 4: Sen. Devlin Robinson (R-PA)

In this episode of the Parkinson’s Policy Podcast, we speak with Senator Devlin Robinson about his sponsorship of Senate Bill 1158, legislation that seeks to ban the use of paraquat in Pennsylvania. Paraquat is a widely used herbicide that has been increasingly linked to Parkinson’s disease through scientific research and legal cases. Senator Robinson shares the motivations behind introducing this bill, the challenges it faces in the legislative process, and what it could mean for both environmental safety and public health. We also discuss: • The growing body of evidence connecting paraquat exposure to Parkinson’s • How state-level policy can influence national change • What advocates and citizens can do to support safer alternatives

Parkinson’s Policy Podcast Episode 3: Rep, Natalie Mihalek

In this episode of Parkinson’s Policy Podcast, we speak with Rep. Natalie Mihalek about her efforts to protect Pennsylvanians from toxic pesticide exposure. Rep. Mihalek is sponsoring a Pennsylvania House bill to ban paraquat, a widely used herbicide that has been linked in research to an increased risk of Parkinson’s disease. She shares why she introduced the legislation, what it would mean for farmers and communities across the Commonwealth, and how state-level policy can play a critical role in reducing environmental risk factors tied to Parkinson’s.