From securing the first-ever federal initiative to end Parkinson’s to the national ban of a toxic chemical known to increase risk for the disease, Parkinson’s policy reached historic heights last year. Together, we showed the country that when our community speaks up, elected leaders listen — and this year, we’re taking our advocacy to the next level.

The Michael J. Fox Foundation (MJFF) has always prioritized building strong relationships with policymakers to help them understand how their decisions affect people with Parkinson’s and those who love them. Our Public Policy team is hard at work reaching out to new and returning government officials and soon, we’ll call on the Parkinson’s community to join us. 

By signing up for our Parkinson’s Policy Network, you’ll receive timely alerts when your voice is needed most. In the meantime, find out more about the issues we’ll be advocating for as new legislative sessions begin in Washington, D.C. and in the states. 

2025 Federal Policy Priorities 

In 2024, the MJFF Public Policy team applied a laser-focused strategy to advocate for the passage of the National Plan to End Parkinson’s Act, which became federal law last summer. We also achieved the critical ban on trichloroethylene (TCE), an unprecedented increase in funding for a key federal program serving military veterans with Parkinson’s and more. MJFF will carry this momentum into 2025 as many federal officials, including a new president and members of Congress, begin their work. 

Ensuring Effective Implementation of the National Plan to End Parkinson’s Act 

The U.S. Department of Health and Human Services (HHS) will be responsible for implementing this new federal law by developing the National Parkinson’s Project and its supporting advisory council. While HHS will oversee the Project, Congress will be responsible for ensuring that the agency does so. Stay tuned — MJFF will offer new and ongoing opportunities for advocates to urge Congress and HHS to effectively develop and resource the Project. 

In early 2025, HHS announced that the National Institutes of Health (NIH), in partnership with the HHS Office of the Assistant Secretary for Health (OASH), would lead the development and maintenance of the Project. NIH and OASH will also assemble the public-private Advisory Council on Parkinson’s Research, Care and Services co-chaired by Walter J. Koroshetz, MD, Director of the National Institute of Neurological Disorders and Stroke at NIH and David Goldstein, MS, Associate Deputy Director for the Office of Science and Medicine at OASH.  

We look forward to working with officials across the federal government to maximize this tremendous opportunity to accelerate the development of game-changing treatments and cures. As our founder, Michael J. Fox, noted in a recent USA Today opinion piece: “We stand ready to partner with the government, this time with unprecedented potential to deliver enormous payoffs for American families.” 

Urging Congress to Vastly Scale Investment in Federal Parkinson’s Research and Care

With 90,000 new diagnoses each year, the number of people living with Parkinson’s in the United States is outpacing federal funding needed to operate critical Parkinson’s research and care programs. This year, MJFF will call for funding for: 

• The Department of Defense Parkinson’s Research Program. This program contributes key learnings to our understanding of environmental and military-related risk factors.  

• The Department of Veterans Affairs Parkinson’s Disease Research, Education and Clinical Centers. These centers offer state-of-the-art care and services to military veterans living with Parkinson’s and other movement disorders. 

• The Centers for Disease Control and Prevention National Neurological Conditions Surveillance System. This data system can fuel research by collecting and analyzing demographic information.  

Addressing and Understanding Environmental Risk Factors for Parkinson’s 

MJFF will advocate for the HEALTHY BRAINS Act in the 119th Congress. Initially introduced in 2024, this bill would require the federal government to research the relationship between environmental risk factors and neurodegenerative diseases like Parkinson’s. Because the HEALTHY BRAINS Act did not pass by the end of the 118th Congress, it must now be re-filed. MJFF will help build support for the bill by urging bipartisan senators and representatives to sign on as co-sponsors and move the bill through the legislative process. MJFF will keep you informed when it’s time to reach out to your members of Congress. 

2025 State Policy Priorities 

Not only is state legislation a powerful tool for change on its own, but it also serves as an incubator for innovation, testing fresh ideas and modeling effective approaches. When these efforts are successful, they can inspire or inform other state-level or federal policies. That’s why, in just the last two years, MJFF has worked with policymakers in nearly 30 states to develop and advance legislation to support the Parkinson’s community. Now, state legislative sessions will begin to convene once again to set budgets and consider policy legislation. 

Funding Parkinson’s and Neurodegenerative Disease Research 

State governments have a unique opportunity to drive the development of treatments and cures for Parkinson’s disease by allocating research funds in state budgets. By building on private and federal investments, state-level research funding can enhance public health and reduce long-term costs for patients and health care systems. Last year, MJFF partnered with Pennsylvania legislators to secure $3 million in the state budget for neurodegenerative disease research, creating a model for other states to follow. In 2025, our Public Policy team will work with California, Connecticut and Texas to advocate for similar investment and continue the work in Pennsylvania.

Creating New and Resourcing Existing Statewide Parkinson’s Registries  

Registries are databases that collect health and demographic information to develop valuable insights about Parkinson’s disease like accurate incidence and prevalence rates. In partnership with MJFF, fourteen states representing over a third of the U.S. population have taken steps to create registries or collect health information on people living with Parkinson’s. Each new database contributes to a clearer picture of Parkinson’s across the United States, helping researchers, clinicians and policymakers make more informed decisions. 

In 2025, MJFF will work with legislators in Indiana, Kentucky, New Jersey, Oregon and Wisconsin to pursue state legislation to establish registries. If successful, these states will join California, Connecticut, Maryland, Massachusetts, Missouri, Nebraska, Nevada, New York, Ohio, South Carolina, Utah, Virginia, Washington and West Virginia. MJFF will also return to states that have recently passed registry legislation including Connecticut, Massachusetts, Missouri, New York and Ohio to advocate for the resources needed to build and operate the registries.

Safeguarding and Increasing Access to Care 

Safeguarding access to care for people living Parkinson’s requires a multifaceted legislative effort that prioritizes the wellbeing of patients, families and caregivers. Some of these policy changes include: 

• Increasing medication affordability to help alleviate the financial burden and ensure that essential treatments remain within reach.  

• Strengthening caregiver support and expanding access to mental health services address the holistic needs of patients and families managing chronic conditions. 

• Creating state-based Parkinson’s or neurodegenerative advisory councils to provide a platform for patients, caregivers and other experts to inform decision-making and shape policies that reflect the unique challenges of living with Parkinson’s.  

Sign Up for the Parkinson’s Policy Network 

Public policy is a critical piece to solving the Parkinson’s puzzle, and grassroots advocacy is how we get it done. By sharing your story, you can help policymakers understand what matters to people with Parkinson’s and shape policies and programs to improve quality of life for patients and families. Become an advocate to help speed treatments and cures by influencing decision-making in Washington D.C. and in your state.