The National Parkinson's Project

The National Plan to End Parkinson’s Act is the first federal legislation aimed at better diagnosing, treating, preventing and curing Parkinson’s disease and atypical parkinsonisms.

Read the full text of the bill.

The U.S. Department of Health and Human Services (HHS) will develop and maintain an integrated national plan to prevent and cure Parkinson’s disease, treat its symptoms and slow or stop its progression. This plan — which will be known as the National Parkinson’s Project — is modeled after the successful National Alzheimer's Project Act (NAPA), which was signed into law in 2011.

According to the Alzheimer’s Impact Movement, NAPA has resulted in “unprecedented federal research funding increases, initiated development of crucial public health infrastructure and improved access to quality care.” The federal government now invests $3.8 billion in Alzheimer’s and dementia research annually, a seven-fold increase since NAPA became law. Read more about NAPA’s achievements to date.

A national, dedicated effort to ending Parkinson’s disease has the potential to: 

• Dramatically increase federal research funding 

• Develop more effective pathways for treatments and cures 

• Improve early diagnosis 

• Spark new and improved models for patient care 

• Create standards and measures to prevent Parkinson’s disease 

• Address health disparities in diagnosis, treatment and clinical trial participation 

• Enhance public awareness of the disease 

Parkinson’s researchers have made groundbreaking progress over the last year, including the discovery of a Parkinson’s biomarker and the development of the first biological staging framework for the disease. With these recent research breakthroughs, now is the time for the federal government to join us in doing everything we can to end Parkinson’s. 

HHS will create a federal advisory council to evaluate the implementation and outcomes of the National Parkinson’s Project, advise the Secretary of HHS on Parkinson’s-related issues and provide recommendations for preventing, diagnosing, treating and curing Parkinson’s disease. 

The advisory council will comprise members of federal agencies, people living with Parkinson’s, care partners, researchers, clinicians and other experts. Each year, the council will provide a report to Congress and the Secretary of HHS that contains evaluations of all federally funded programs related to Parkinson’s as well as recommendations to improve health outcomes, limit exposures to environmental risk factors and reduce the financial impact on patients and the federal government. 

The scope and specific elements of the National Parkinson’s Project will be determined by HHS; however, the bill explicitly seeks to prevent, halt or slow the course of Parkinson’s and improve the quality of life of those living with the disease, as well as their families and their care partners. This may include supporting Parkinson’s research, providing resources to improve patient care, reducing the financial impact of the disease on patients and their families or other strategies. 

As of July 2024, the Secretary of HHS can begin to develop and establish the National Parkinson’s Project and its advisory council. This process will require input and planning support from government agencies and other stakeholders, including The Michael J. Fox Foundation (MJFF). There is no specific timeline for the development of the project or the council, but it will likely take several months. 

While MJFF looks forward to supporting HHS as they select experts from the Parkinson’s community to serve on the advisory council, it will ultimately be up to the Secretary of HHS to determine who will be appointed to those seats. In the meantime, MJFF’s Public Policy team is in contact with HHS and the Biden administration to ensure that the National Parkinson’s Project and the advisory council are established and implemented swiftly. 

The Parkinson’s community — including tens of thousands of policy advocates, partner organizations and champions in Congress — rallied together to help policymakers understand the importance of this legislation. Advocates added signatures to MJFF’s petition, contacted their representatives and senators, published op-eds and shared stories on social media. In total, supporters in all 50 states sent more than 70,000 messages to Congress. In addition, nearly 1,000 advocates joined MJFF to meet directly with their members of Congress. Donor support, including funds raised during the annual Parkinson’s Unity Walk, is also instrumental in MJFF’s public policy and advocacy efforts. 

Please take a moment to thank your members of Congress for passing the bipartisan National Plan to End Parkinson’s Act. There may be additional opportunities for our community to advocate as HHS begins to develop the National Parkinson’s Project. MJFF will keep you informed. 

• Visit this web page and our Public Policy newsfeed. 

• Sign up to receive email updates and any additional opportunities to advocate through the Parkinson’s Policy Network. 

• Follow our social channels, including Facebook, Instagram, LinkedIn and X (formerly known as Twitter). 

• Email the MJFF Public Policy team at policy@michaeljfox.org with any questions.