Shaping the Future of Parkinson’s Policy: Meet Our Chief Strategy and Policy Officer

For the first time, the Parkinson’s Foundation is connecting its mission and vision to policy and advocacy work that drives change at the federal and state levels. Through this work, the Foundation aims to shape a future where Parkinson’s disease (PD) research is steadily funded, every person with PD has access to the care and support they deserve, and fewer people develop PD in the first place.

Leading these efforts is Andi Lipstein Fristedt, Executive Vice President, Chief Strategy and Policy Officer. Andi leads the Foundation’s strategic direction and policy initiatives. Andi brings nearly 20 years of leadership experience to the Parkinson’s Foundation. In this interview, Andi shares how she views policy as an opportunity and powerful tool to accelerate progress and create meaningful change — starting now.

1. Can you tell us about your prior policy experience in the health space?

Before joining the Parkinson's Foundation, I spent most of my career in government. Most recently, I was at the Centers for Disease Control (CDC) where I led policy, budget, communications and congressional engagement efforts, as well as its global health work. Before that I was at the Food and Drug Administration (FDA) where I helped advance key policies to strengthen patient care and regulatory processes. Before that, I was on Capitol Hill for almost a decade with the Senate Committee on Health, Education, Labor and Pensions.

These diverse perspectives fuel my passion to help bridge the gap between Parkinson’s research, care and policy at both the state and federal level.

2. Why bring your talents to the Parkinson’s community?

Like so many others, Parkinson’s disease has impacted people I care deeply about. I am excited about the opportunity to come to an organization that understands the people it serves and is positioned to drive progress alongside them. I’m here to lead change for people living with Parkinson’s and their care partners. These are challenging times in policy circles, but there's a real opportunity to reimagine what’s possible. The federal and state policy landscape gives us opportunity to make short- and long-term changes in the disease space

3. What are the top policy issues for people with Parkinson’s? How is the Parkinson’s Foundation addressing them?

Right now, here are the Foundation’s advocacy priorities:

• Protecting and advancing the National Parkinson's Project. The National Plan to End Parkinson’s Act was signed into law in 2024, creating the National Parkinson’s Project, and now it's up to the administration to move it forward, and up to us to protect it. This is the first federal project dedicated to PD research, prevention and care — our policy work will help ensure it delivers real results for people with PD.

• Research funding. Parkinson's is the fastest-growing neurodegenerative disease, yet federal funding has not kept pace with its rise. In addition to advocating for more funding at the National Institutes of Health (NIH) and other federal agencies, we're starting to see research funding opportunities in state governments.

“Our goal is to secure $600 million a year of Parkinson's disease research at the NIH by 2028. We aim to fully deliver on the promise of this pivotal moment in PD discovery.”

• Environmental health threats. Environmental factors, such as chemicals like paraquat and trichloroethylene (TCE) have been tied to Parkinson's, and this is where policy changes can make a big difference. Paraquat is banned in more than 70 countries, including China, even though they still sell it to the U.S. It's something that we have the power to change by working with the Environmental Protection Agency (EPA) and engaging with state governments.
• Helping people access PD care. There's so much work to do here at the federal and state levels, making sure that we're supporting policies that help people with Parkinson’s access timely, quality and affordable care wherever they live. For example, we’ve seen how hard the uncertainty around telehealth coverage has made care for providers and people with PD.
• Supporting public health agencies. Public health agencies need the tools and the authority to keep innovating new PD treatments and care breakthroughs. This is not a given. We work to ensure the strongest possible public health programs, to ensure that we're moving towards better treatments and a cure for Parkinson's.

4. How can people with Parkinson’s and allies get involved?

There's lots of opportunities for people with Parkinson's and the people who care about them to engage in policy. Policymakers need to hear your stories and experiences as they are considering policy changes, and we’re working to help people engage with policymakers, year-round.

One exciting opportunity to engage with Congress is coming up March 15 to 18, in Washington, D.C., through our Parkinson's Policy Forum and Day of Action. We will host this event alongside The Michael J. Fox Foundation for Parkinson’s Research and the American Parkinson Disease Association. We’ll be inviting advocates to come to D.C., spend time together as a community and engage lawmakers around key priorities for the Parkinson's community.

But you don’t have to be in Washington, D.C., or a state capital to reach out to your lawmakers, and there are lots of other ways to be involved in advocacy beyond meeting with policymakers. The Parkinson’s Foundation is building and expanding our platform to share timely action items and help support advocates who want to do that work and make their voices heard.

5. Why should policymakers care about policies that impact Parkinson’s?

Parkinson’s is the fastest-growing neurodegenerative disease, with more than 1 million Americans living with PD and 90,000 new people diagnosed each year. Each of those people are a constituent. Policymakers have a responsibility to address diseases like PD that drive health care costs and impact communities. Research for cures has always been, and must remain, bipartisan. When policymakers hear stories from their constituents facing life altering issues, they listen — especially when those voices unite.

We are at a pivotal moment, with scientific advancements within reach. Now is not the time to pump the breaks but hit the gas to take advantage of the incredible scientific progress that has been happening to yield real changes for people living with PD. Sustained congressional investment in research and programs leads directly to earlier detection, better treatments, and a cure, once thought impossible.

6. What should people in the PD community tell their Congressperson or State Representative?

Part of the Parkinson’s Foundation policy strategy is showing how policy decisions shape the daily lives of people with Parkinson's and, in turn, ensuring that policy changes reflect lived experience. We need legislators to see a future where new disease-modifying therapies exist, where there are enough specialists to treat people with Parkinson’s and where there's a cure. People with Parkinson’s and their families play a critical role in sharing what these possibilities mean to them.

Lawmakers respond to personal stories — they make this disease tangible. Connecting policy to the realities of living with Parkinson’s is a vital component of our policy work.

7. What gives you hope about helping people with Parkinson’s advocate for policy change?

The community. There are so many people across the country and world, demanding a different future where we think more about Parkinson's disease on a federal and state policy level. Where legislators don’t just think about the possibility of a cure, they support funding that makes it a reality. The strength and passion of this community is what will ultimately make the difference in the policy space.

8. What’s next for Parkinson’s Foundation policy and advocacy work?

At the Parkinson’s Foundation, we’re focused on policies that improve life for people living with PD today and accelerate progress toward better care and a cure. We closely monitor the actions of Congress, federal agencies and state lawmakers that impact the PD community. There's so much change happening across health agencies, and we know that a strong, effective policy strategy will help advance care, research and support for people with Parkinson's.

We’re excited for the Parkinson's Policy Forum and Day of Action coming up in March (learn more) and the launch of our policy priorities.

We also invite our community to help raise PD awareness. Join us at the local level, stay connected with us and share information with friends and family.

Make your voice heard. Sign up today to receive our emails and take part in Parkinson’s Foundation advocacy work. If you already receive our emails, sign in to the Online Supporter Center and opt into Policy emails under Communication Preferences.