Parkinson’s Advocates Rally in D.C., Urge Congress to Boost Research Funding & Ban Parkinson’s-Linked Chemical

• Advocates push for a $600 million annual commitment by 2028 to address the fastest-growing neurological condition in the U.S. and globally 

• The event is hosted by leading national organizations: The Michael J. Fox Foundation for Parkinson’s Research, the American Parkinson Disease Association, the Lewy Body Dementia Association, the Parkinson’s Foundation and the Parkinson’s & Movement Disorder Alliance

Washington, D.C. (September 9, 2025) — Every six minutes, someone in the United States is diagnosed with Parkinson’s disease. This growing public health crisis costs Americans, their families and the U.S. government over $52 billion every year.

This week, more than 250 Parkinson’s patients, family members, care partners, researchers and clinicians from 45 states are gathering in the nation’s capital to call on Congress to accelerate progress toward better treatments and cures for Parkinson’s disease — the fastest-growing neurological disease in the world.

The advocates are participating in the 2025 Parkinson’s Policy Forum, a nonpartisan event hosted by The Michael J. Fox Foundation for Parkinson’s Research (MJFF), the American Parkinson Disease Association (APDA), the Lewy Body Dementia Association (LBDA), the Parkinson’s Foundation and the Parkinson’s & Movement Disorder (PMD) Alliance. This marks the first in-person Parkinson’s Capitol Hill advocacy day since 2019.

The Forum is honoring Senators Shelley Moore Capito (R-WV) and Chris Murphy (D-CT), Representatives Gus Bilirakis (R-FL-12) and Paul Tonko (D-NY-20) and former Representative Jennifer Wexton (D-VA-10) for their leadership on Parkinson’s disease.

Over two days, attendees are meeting with members of Congress to share their personal experiences and call for action on three urgent priorities:  

• Increase federal research funding for Parkinson’s to set the U.S. on the path to dedicating $600 million annually for Parkinson’s-specific research at the National Institutes of Health (NIH) by 2028. 

  • The $600 million annual investment by 2028 is needed to meet the urgency and opportunity of this moment in research, to alleviate the burden of this disease and to provide hope for a cure. 

  • Securing the $48.7 billion for the NIH in Fiscal Year 2026 — as provided in the FY26 Senate Labor, Health and Human Services, Education and Related Agencies (LHHS) appropriations bill passed by Committee on July 31, 2025 — is an important first step in achieving this goal and ensuring that current progress isn’t reversed. 

• Implement and fund the National Parkinson’s Project (NPP) — the first-ever federal initiative to better diagnose, treat, prevent and cure Parkinson’s — by:

  • Urging the Department of Health and Human Services and the White House to seat the federal Advisory Council for the NPP no later than the end of 2025. 

  • Supporting $5 million in FY26 — consistent with the Senate FY26 LHHS appropriations bill — to launch the initiative and support its mission. 

• Ban paraquat: Urge a final Environmental Protection Agency (EPA) rule banning the use of the herbicide paraquat, which has been scientifically linked to increased Parkinson’s risk.

  • 70 countries, including China and the entire European Union, have banned paraquat because of its substantial risks to human health.

  • Paraquat’s safety has been under review at the EPA since late 2022.

“Advocating with hundreds of others who share this Parkinson’s journey reminds me that there is strength in numbers,” said Policy Forum attendee Lynn Hagerbrant of Greenwich, Connecticut. “Meeting face-to-face with lawmakers gives us the chance to show them the reality of living with Parkinson’s disease — from our daily challenges to our hopes for the future. I truly believe that by sharing our stories, we can help shape the policies and funding decisions that will bring us closer to a world without Parkinson’s.”

Forum attendees will hear from community leaders, government relations professionals and guest speakers, including Lonnie Ali, who will share her story and reflect on her role as a care partner to her late husband, Muhammad Ali. Muhammad Ali lived with Parkinson’s disease and was active in advocacy himself, including delivering historic testimony before Congress alongside Michael J. Fox in 2002.

“My journey as a Parkinson’s care partner and advocate has shown me that when this community — patients, partners and families — comes together, we shine a light on the path forward,” said Lonnie Ali. “Advocacy is about standing side by side with our loved ones living with Parkinson’s to push for better care, more support and a brighter future. That united strength is what drives us closer to a cure for Parkinson’s disease.” 

The Unified Parkinson’s Advocacy Council — a coalition of 29 national and local organizations — will also host an annual Parkinson’s National Day of Action on September 9. This digital advocacy opportunity will enable thousands more advocates to join in from home by emailing lawmakers in support of the Forum’s calls to action.  

Together, the Parkinson’s Policy Forum and National Day of Action build on a monthslong advocacy campaign including a joint statement issued earlier this year by APDA, MJFF and Parkinson’s Foundation urging strong federal investment in the NIH.

Parkinson’s and atypical parkinsonisms including Lewy body dementia are complex neurodegenerative diseases that impact movement, cognition, mood and overall quality of life. An estimated more than 1 million Americans live with Parkinson’s today, including over 110,000 U.S. military veterans. With no way to prevent, stop or slow the disease, Parkinson’s is projected to double globally by 2040. 

Representatives of the 2025 Parkinson’s Policy Forum host organizations said: 

• “The choices Congress makes today will shape the future for millions of Americans affected by Parkinson’s disease,” said Dan Feehan, chief policy and government affairs officer at The Michael J. Fox Foundation. “The unified voice of Parkinson’s advocates — patients, families and care partners — is critical to bringing urgency and humanity to every congressional decision. At The Michael J. Fox Foundation, we’re proud to stand with thousands of advocates and partner organizations to show Congress how yesterday’s research investments have fueled today’s breakthroughs — and why bold federal action is urgently needed to turn scientific discoveries into treatments, and ultimately, a cure.” 

• “The American Parkinson Disease Association is proud to join forces with partner organizations to elevate our collective voice. With over a million people in the United States diagnosed with Parkinson’s disease and a new diagnosis made every six minutes, the urgency of this moment cannot be overstated. We call on Congress to recognize Parkinson’s disease as a national priority,” states Anne Hubbard, Chief Public Policy Officer, American Parkinson Disease Association (APDA). “At the core of APDA’s mission is a deep commitment to empowering those affected by Parkinson’s to live life to the fullest, to advance research, and to accelerate the search for a cure. Securing robust federal support is not just necessary, it is vital to fulfilling that promise.” 

• “The Lewy Body Dementia Association is proud to be a member of the Unified Parkinson’s Advocacy Council, and to be united with our partner organizations to collectively raise our voice and amplify the need for federal support for those living with Parkinson’s disease dementia (PDD), a major driver of Lewy body dementia (LBD),”  states Allison Feldman, Chief Executive Officer of the Lewy Body Dementia Association (LBDA). “People with Parkinson's are more than three times as likely to develop dementia. Together with the other major form, dementia with Lewy bodies (DLB), LBD is the 2nd most common form of neurodegenerative disease next to Alzheimer’s, affecting approximately 1.4 million people in the United States. We believe that no one should have to face LBD alone and on this National Day of Action, we call on Congress to actively and urgently support advancing critical research for better treatments and improved quality of life for individuals with neurodegenerative diseases, their families and care partners now and in the future.”

• “The mission of the Parkinson’s Foundation is rooted in taking immediate action that can make life better for people living with PD today, while also advancing research toward a cure for a better tomorrow,” said Parkinson’s Foundation Executive Vice President & Chief Strategy and Policy Officer, Andi Lipstein Fristedt. “Given recent progress, the urgency and the opportunity is greater now than ever and we should not let this moment pass us by. That’s why today we are once again championing that mission by standing before Congress, empowered by the energy, experience and passion of our global Parkinson’s community, and demanding measurable action for the more than 1.1 million Americans living with this disease.”

• “At PMD Alliance, we see the power of shared purpose every single day — that's what unites our vibrant and diverse Movement Disorders Ecosystem,” said Andrea Merriam, chief executive officer at PMD Alliance. “So when the opportunity came to stand shoulder to shoulder with other Parkinson’s organizations for this National Day of Action, we knew the power of that decision, and we didn't hesitate. When we unite as one voice, we amplify the realities of people living with PD — and send an unmistakable message to policymakers: You’ve heard from us before, but this time, we’re standing together, and we won’t wait quietly. We need action — now.”