We’re at a Turning Point for Parkinson’s — Your Story Can Help Move Congress
The Parkinson’s disease (PD) community is currently facing both urgent challenges and real opportunities. More than 90,000 Americans are diagnosed each year, and over 1 million people are living with Parkinson’s nationwide. At the same time, new legislation, scientific progress, and growing awareness of environmental risks give us a historic chance to drive meaningful change.
To help us address the needs of the PD community, APDA recently launched a brand-new Department of Public Policy & Advocacy and we are moving full steam ahead. (Learn more about APDA’s new Chief Public Policy Officer, Anne Hubbard, in this Q&A!)
During APDA’s recent webcast with Congressman Gus Bilirakis and Parkinson’s physician experts Dr. Ray Dorsey and Dr. Michael Okun, one message stood out: Congress is listening — but they need to hear from you.
APDA’s Top Public Policy Priorities
Below are APDA’s top advocacy priorities and how your voice can help push them forward.
Fund and Implement the National Parkinson’s Project
The 2024 passage of the National Plan to End Parkinson’s Act was a major victory — but now the real work begins.
As a result of the new law, APDA is asking Congress to:
- Seat the federal Advisory Council required under the law by the end of 2025.
- Support $5 million in the FY26 budget to officially launch the National Parkinson’s Project.
This coordinated national strategy is a critical first step toward preventing and ultimately ending Parkinson’s disease.
Increase Federal Investment in Parkinson’s disease Research
Parkinson’s costs the U.S. more than $60 billion each year, yet research funding remains far too low.
In addition to the $5 million mentioned above, APDA is urging Congress to:
- Commit to $600 million annually for PD research by 2028.
- Maintain strong funding for the National Institutes of Health (NIH).
- Restore and grow the Department of Defense Parkinson’s Research Program to study service-related exposures.
- Invest in the CDC’s neurological disease tracking system.
There has already been encouraging progress: the November 2025 government funding bill included $80 million for Veterans Affairs (VA) neurology centers, with $16 million dedicated to Parkinson’s Disease Research, Education, and Clinical Centers (PADRECCs) — a $1.5 million increase.
End Paraquat Use in the United States
Paraquat, a toxic herbicide banned in 70+ countries, is strongly linked to Parkinson’s, yet is still used in the U.S.
APDA is calling on Congress to ensure that the EPA’s final decision:
- Recognizes paraquat’s clear risks and scientific links to PD
- Acknowledges safer alternatives
- Ends the use of paraquat in the U.S.
The ban on paraquat could prevent countless future cases of Parkinson’s, especially in rural communities where pesticides are more widely used.
Your Story Matters
Lawmakers take action when real people share real experiences. During our webcast, Congressman Bilirakis emphasized that personal stories were key to passing the National Plan — members of Congress came forward with their own connections to Parkinson’s, fueling bipartisan momentum.
Your voice can have the same impact.
Whether you’re living with Parkinson’s, caring for someone who is, or honoring someone you’ve lost, your story helps Congress understand what’s at stake.
How You Can Get Involved
There are many ways you can make a difference:
- Email or call your representatives and encourage them support increased federal investment Parkinson’s disease research.
- Register to participate in-person for the Parkinson’s Policy Forum in Washington, DC (March 15-18, 2026) by registering here.
- Participate virtually in the National Day of Action in March 2026 (more details to come).
- Invite your elected officials to a Rock Steady Boxing class or Parkinson’s disease support group meeting
- Sign up for APDA action alerts and advocacy opportunities
And if you are interested and available to come to Washington, DC, save the date for the 2026 Parkinson’s Policy Forum (mentioned above) on March 15–18, 2026, coordinated jointly by APDA, the Michael J. Fox Foundation, and the Parkinson’s Foundation. It is a powerful opportunity to tell your story in person to those who can impact real change.
Your Voice Can Change the Future
APDA is fighting for research, care, prevention, and support for everyone affected by Parkinson’s — but lasting progress depends on all of us. Together, we can make sure Congress meets this moment with the urgency and action Parkinson’s deserves.
Tips & Takeaways
- APDA’s new Department of Public Policy & Advocacy is determined to make Parkinson’s the federal priority it deserves to be and to push for increased funding.
- APDA’s top priorities are focused on the National Parkinson’s Project, increasing federal investment in PD research, and ending the use of paraquat in the U.S.
- Learn more about APDA’s new Chief Public Policy Officer, Anne Hubbard in this Q&A.
- You can stay in the know on the latest advocacy news and opportunities to get involved by filling out this form.