For more than eight years, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) has channeled the energy of passionate advocates to advance government policies that benefit the Parkinson’s community. We do that by:

• building strong relationships with legislators and government officials. 

• raising the visibility of and educating decision-makers about Parkinson’s disease and its personal and economic impact. 

• connecting members of the Parkinson’s community with opportunities to share their stories and raise their voices on issues they care about. 

In 2024, our policy work reached new heights as the nation’s first federal bill dedicated to ending Parkinson’s disease, the National Plan to End Parkinson’s Act, was signed into law. All the while, we supported dozens of bills and policy changes; lobbied for historic increases in government funding for research and care programs; secured a landmark toxic chemical ban and welcomed more than 40,000 new people to our nationwide network of policy advocates (sign up here if you haven’t already!).

By calling, writing and meeting with your representatives, publishing op-eds, posting on social media and more, you’ve helped policymakers understand what matters to the Parkinson’s community. Read on to learn more about what we accomplished together in 2024 and for a sneak peek into what’s in store for 2025. 

The National Plan to End Parkinson’s Act Becomes Law

Following its unanimous passage in the U.S. Senate in May 2024, the bipartisan National Plan to End Parkinson’s Act was signed into law by President Biden on July 2, 2024. The new law establishes the National Parkinson’s Project, a first-ever federal initiative to accelerate research, improve patient care and ultimately prevent and cure Parkinson’s. The U.S. Department of Health and Human Services (HHS) is now tasked with developing and maintaining the National Parkinson’s Project and its advisory council.

Every step of the way, tens of thousands of patients, family members, researchers and caregivers joined MJFF in the work to advance the legislation from idea to law. From meeting directly with legislators to sending emails and making calls, the Parkinson’s community sent more than 70,000 messages to help build strong bipartisan support for the bill, securing 215 total co-sponsors in Congress.

Looking ahead to 2025, MJFF's Public Policy team has already begun laying the groundwork to build strong relationships with new officials at HHS, in the White House and in Congress to ensure the National Parkinson’s Project and advisory council are implemented swiftly and the work can begin. 

Environmental Advocacy Results in Long-Sought Wins 

In December 2024, the U.S. Environmental Protection Agency (EPA) announced a near-complete ban on trichloroethylene, an industrial solvent known to increase Parkinson’s risk. After nearly a decade of advocacy to reduce harmful environmental exposures, we celebrated this critical step to protect the health of millions of Americans. 

MJFF has also called for the EPA to put an end to the use of paraquat, a pesticide used on farms. In 2020, the EPA reauthorized paraquat’s use for another 15 years but announced its plans to reconsider paraquat’s safety in 2022 with a promise to do so by January 2025. This year, MJFF partnered with the Environmental Working Group (EWG) for an advocacy push leading up to the deadline resulting in 60,000 signatures on a new petition, a congressional briefing, in-person meetings with EPA staff, letters signed by dozens of members of Congress and many first-hand accounts shared with EPA.

On the state level, MJFF worked in coalition with EWG and other partner organizations to support a bill that would make California the first in the U.S. to ban paraquat. The final legislation was changed from a ban to a requirement for the state to re-evaluate paraquat’s safety by January 1, 2029. We rallied California advocates to urge Governor Newsom to sign the bill into law, which he did 10 days later.

​​​​​​MJFF also supported new legislation called the HEALTHY BRAINS Act, which would require the federal government to study how environmental risk factors contribute to the development of neurodegenerative diseases. MJFF worked with the bill’s lead sponsors former Representative Jennifer Wexton (D-VA) and Representative Gus Bilirakis (R-FL) on the bill from its inception. Our goal is for it to be introduced in the U.S. Senate and re-introduced in the U.S. House in early 2025.

Congress Boosts Funding for Parkinson’s Research and Care 

Every year, MJFF champions increased federal funding for programs that advance Parkinson’s research and care. This year, Congress passed a budget that included a $4.2 million increase for the U.S. Department of Veterans Affairs Parkinson’s Disease Research, Education and Clinical Centers. This 40 percent budget increase is the most significant in the history of the program and is a needed boost to ensure that U.S. military veterans living with Parkinson’s receive the high-quality, comprehensive care they deserve. 

12 States Pass Legislation to Benefit Parkinson’s Patients and Families 

This year, 12 states passed legislation to support the Parkinson’s community, including creating new research registries, expanding access to insurance coverage for biomarker testing, establishing new genetic testing protections and addressing environmental risk factors.

Connecticut, Massachusetts and New York passed legislation to establish statewide Parkinson’s disease research registries this year. These population-based databases can track critical health and demographic information about people living with Parkinson’s. The resulting data and insights can fuel research and help scientists, clinicians and policymakers better understand the full nature of Parkinson’s prevalence and progression and how to treat it. There are now 14 states that have taken steps to create these registries, covering a little more than a third of the U.S. population.

In June, MJFF joined Pennsylvania state representative Kyle Mullins to announce his intent to seek $10 million to fund research on neurodegenerative diseases including Parkinson’s. With the help of local advocates, we were able to secure a starter fund of $3 million. This is the first time a state has ever dedicated general fund dollars for Parkinson’s research in the history of MJFF’s public policy efforts. In 2025, MJFF will use this win as a model for investment in other states. 

Learn more about how Colorado, Florida, Louisiana and others supported people living with Parkinson’s this year. 

Parkinson’s Policy Network Surpasses 125,000 Members 

Advocacy makes it possible for people and organizations to influence decision-making on issues and policies they care most about. That’s why a robust, coordinated advocacy effort is critical to ensuring that policymakers regularly hear from people who are personally impacted by Parkinson’s disease.

This year, 43,000 new people joined MJFF’s advocacy program, the Parkinson’s Policy Network, bringing the total number of members to 126,000! Nearly 600 of those advocates joined MJFF for 700 meetings with government officials to share their personal stories and help us make the case for government investments in Parkinson’s research and care in 2024.

In September, our annual National Day of Action saw thousands of advocates across the country unite to encourage government leaders to support the 1 million Americans living with Parkinson’s disease. In just 24 hours, people in all 50 states sent more than 12,200 messages urging officials to take steps to better understand and address environmental risk factors for Parkinson’s disease.

Inspired? Here Are Three Ways to Join Us Before the End of the Year 

Use our simple online forms to contact policymakers and urge them to act on issues that make a difference for the Parkinson’s community. It only takes a few minutes — and yet, your advocacy can help effect real change. 

• Sign our petition to the White House to join our call for a national paraquat ban.  
• Ask your U.S. Representatives to co-sponsor the HEALTHY BRAINS Act. 
• Urge Congress to fund research and care for U.S. veterans living with Parkinson’s. 

Don’t forget to sign up for the Parkinson's Policy Network to stay informed about future opportunities to raise your voice in 2025.