This year, in a partisan environment, Congress came together to pass historic bipartisan legislation with the potential to change the lives of the 1 million Americans living with Parkinson’s disease, their families and caregivers. Thanks to that legislative action, the National Parkinson’s Project begins now with the potential to accelerate research, improve patient care and ultimately prevent and cure Parkinson’s.
Looking ahead, the next six months are a critical time as the project and its supporting advisory council are stood up by the U.S. Department of Health and Human Services and begin the work. Here is what you need to know:
What Is Parkinson’s Disease?
Parkinson’s disease is the fastest-growing neurological disease in the world. Many brain diseases like Alzheimer’s and Parkinson’s share risk factors, chief among those is advancing age. And with an aging population in the United States, the number of people with Parkinson’s is expected to double by 2040.
Meanwhile, the growing burden of this disease puts significant pressure on federal budgets, particularly through Medicare, which provides health coverage to approximately 90 percent of people with Parkinson’s in the United States. As the staggering toll of this progressive and incurable disease mounts into a public health and economic crisis, it has become ripe for urgent intervention and public-private collaboration.
The diagnostic tools and treatments for Parkinson’s have lagged far behind those available for other diseases. Recent breakthroughs are propelling us closer by the day, but right now, there is still no definitive test widely available for diagnosing the disease. Current therapies do not stop Parkinson’s from progressing, causing patients to face a wide range of under-addressed needs. As the disease advances and symptoms worsen, some patients may require costly interventions like hospital stays or deep brain stimulation surgery.
Strategic Collaboration Can Leverage Today’s Scientific Opportunity
The good news? Parkinson’s science is catching up. Driven by our impatience and ambitious goal of eliminating Parkinson’s in our lifetime, The Michael J. Fox Foundation (MJFF) has funded more than $2 billion in research grants to advance game-changing breakthroughs since our founding in 2000. Our approach has always been patient-centric and solution-driven, bringing together the smartest minds to make bold, high-impact investments with the biggest payoffs for patients. And over the last 18 months, we’ve gotten tangibly closer to a cure than we’ve ever been, bringing unprecedented clarity to where strategic partnership can yield the fastest gains.
Fueled by this new momentum, we began laying the groundwork for a historic partnership with the federal government through the National Plan to End Parkinson’s Act. We mobilized strong bipartisan support in Congress, securing 215 total co-sponsors, and activated tens of thousands of patients, families and advocates to advance the legislation every step of the way. Made possible in part by the extraordinary advocacy effort by the Parkinson’s community in all 50 states, the National Plan to End Parkinson’s Act became law in July 2024.
The law directs the U.S. Department of Health and Human Services (HHS) to develop and maintain the National Parkinson’s Project — a first-ever initiative to accelerate research, improve patient care and ultimately prevent and cure Parkinson’s — and its supporting public-private advisory council. Now, the federal government is poised to adopt a coordinated, whole-of-government approach to fast-track new treatments that transform the lives of the many Americans, including Medicare beneficiaries, touched by this disease.
Because of its complex nature, Parkinson’s research is currently spread across multiple federal agencies including the National Institutes of Health, the Department of Defense and the Department of Veterans Affairs. The National Parkinson’s Project provides an efficient framework for aligning the work of these agencies and fostering public-private partnerships to identify and streamline the most promising research and care efforts.
Fueling Discoveries for Millions of People Affected by Brain Diseases
Today’s Parkinson’s research may also stand to benefit tomorrow’s Alzheimer’s, dementia or MS patient. MJFF-funded research is already illuminating greater biological overlap between Parkinson’s and other neurological diseases, generating mutually beneficial insights and multiplying the value of our collective investments. With this head start, the National Parkinson’s Project could do more than ever to accelerate earlier diagnosis and bring to market treatments and cures for the many millions affected by brain disease.
Not only does the National Parkinson’s Project offer the possibility to maximize resources for the greatest impact, but it also has the potential to drive significant cost savings for patients and families, public health systems and the federal government. Together with other neurodegenerative diseases, Parkinson’s accounts for $655 billion in annual costs in the United States.
A Future Without Parkinson’s Disease Is Within Reach
The effort to end Parkinson’s disease is at a critical juncture, and the promise of transformative progress has never been greater. The National Parkinson’s Project is a once-in-a-generation opportunity for the United States to take the lead in addressing one of the most pressing global public health challenges of our time.
As Michael J. Fox has said, “When the cure for Parkinson’s is found — and it will be — it will be because of all of us, working together.” At The Michael J. Fox Foundation, we remain committed to working with HHS and Congress on innovative, collaborative solutions that matter most to the patients, families and caregivers affected by this disease.