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The National Parkinson's Project

On July 2, 2024, President Biden signed the National Plan to End Parkinson’s Act into law!

  • Capitol Hill

    A Win for the Parkinson’s Community

    Now that the bill has been signed into law, the U.S. Department of Health and Human Services (HHS) will establish the National Parkinson’s Project, a first-ever federal initiative to prevent and cure Parkinson’s disease, treat its symptoms and slow or stop its progression. It will also establish a federal advisory council that will provide recommendations and guidance for making progress against Parkinson’s disease and atypical parkinsonisms.

    • What is the National Plan to End Parkinson’s Act?

      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.

    • How will this legislation advance the goal of preventing and curing Parkinson’s?

      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.

    • Why do we need a National Parkinson’s Project? And why now?

      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. 

    • How will HHS evaluate progress of the National Parkinson’s Project?

      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. 

    • How will the National Parkinson’s Project help people living with Parkinson’s today?

      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. 

    • What happens next and what is the timeline for the project?

      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. 

    • How did the Parkinson’s community contribute to the passing of the National Plan to End Parkinson’s Act?

      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. 

    • Can patients, families or advocates do anything else to support the National Parkinson's Project?

      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. 

    • Where can I find updates about the National Parkinson’s Project?

  • Heart

    Thank Your Senators and Representatives

    Please join us in thanking the 215 members of Congress who supported the National Plan to End Parkinson's Act!

  • When we started the Foundation, we could only dream of the breakthroughs the Parkinson’s community has experienced over the last year, from the discovery of a biomarker to the federal government advancing a plan to end Parkinson’s. Today, I’m endlessly thankful to everyone who has carried the load to get us here — advocates, scientists, patients, families, clinicians, caregivers and legislators, especially the bill’s lead sponsors Senators Shelley Moore Capito and Chris Murphy and Representatives Gus Bilirakis and Paul Tonko as well as Senate Majority Leader Chuck Schumer and Representative Jennifer Wexton.
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