NEW YORK (May 23, 2024) — The Michael J. Fox Foundation for Parkinson’s Research (MJFF) today celebrates the passage of The National Plan to End Parkinson’s Act (H.R.2365/S.1064) in the U.S. Senate. This is the first-ever federal legislation dedicated to ending Parkinson’s. The bill passed in the U.S. House of Representatives last December. With passage in both the House and the Senate, the bill will be sent to President Biden’s desk to be signed into law.
Majority Leader Chuck Schumer (D-NY) announced passage of the legislation this afternoon from the floor of the Senate (video below). With bipartisan support and 215 total cosponsors in Congress, Senators Shelley Moore Capito (R-WV) and Chris Murphy (D-CT) served as the lead sponsors of the bill in the U.S. Senate with Representatives Gus Bilirakis (R-FL) and Paul Tonko (D-NY) at the helm in the U.S. House of Representatives.
“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,” says Michael J. Fox. “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. A National Plan to End Parkinson’s is a historic opportunity to accelerate our search for cures, and now is the time. The Foundation stands ready to partner with our national leaders to bring the Plan to life and make today’s generation of patients the last to live with Parkinson’s as we know it.”
This legislation will unite public and private sector experts through a federal advisory council to create and implement a national plan to better diagnose, prevent, treat and ultimately cure Parkinson’s disease. The council — made up of members of federal agencies, people living with Parkinson’s, care partners, researchers, clinicians and other experts — will regularly report on its progress to Congress and the U.S. Secretary of Health and Human Services.
A cross-country strategy to end Parkinson’s 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 and
- Enhance public awareness of the disease.
“Today, the Parkinson’s community has made history,” said Ted Thompson, MJFF’s senior vice president of public policy. “As we celebrate this moment, The Michael J. Fox Foundation expresses our gratitude to every grassroots advocate, partner organization and member of Congress who helped advance this bill. Signing this bill into law will ensure much-needed collaboration between the public and private sectors in the name of better treatments, earlier diagnosis and greater access to quality care. For every American living with Parkinson’s or an atypical parkinsonism, their families and caregivers, we look forward to continuing our work with policymakers to bring the National Plan to fruition.”
The legislation is modeled after the successful National Alzheimer’s Project Act (NAPA), signed into law in 2011. NAPA has paved the way for improved therapies and greater access to quality care for patients, and the federal government now invests $3.8 billion in Alzheimer’s and dementia research annually, a seven-fold increase since NAPA became law.
Parkinson’s is the second most common and fastest-growing neurological disease in the world. An estimated more than 1 million Americans live with Parkinson’s today, including over 110,000 U.S. military veterans. It costs the U.S. $52 billion per year to care for people living with Parkinson’s in direct and indirect costs. The federal government covers about half of that cost while the rest falls to people with Parkinson’s, their families and caregivers.
In April 2023, MJFF announced the discovery and validation of a Parkinson’s biomarker through the Parkinson’s Progression Markers Initiative, its landmark clinical study with sites around the globe. This critical research breakthrough promises a future where every person living with Parkinson’s can expect improved care and treatments — and newly diagnosed individuals may never advance to full-blown symptoms.
About The Michael J. Fox Foundation for Parkinson’s Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding $2 billion in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; creates a robust open-access data set and biosample library to speed scientific breakthroughs and treatment with its landmark clinical study, PPMI; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson’s awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world. For more information, visit us at www.michaeljfox.org, Facebook, Twitter, LinkedIn.
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Media Contact:
Brenna Callahan
The Michael J. Fox Foundation
bcallahan@michaeljfox.org
(781) 572-5060