As the National Parkinson’s Project Advisory Council prepares to meet for the first time on June 29, I’ve been thinking about what this new chapter means for our community.
The Council exists because people living with Parkinson’s, care partners, families, researchers and clinicians spent years making the case that this disease deserves a coordinated national response. They shared stories, educated policymakers and built the bipartisan support that led to the National Parkinson’s Project (NPP). And now, we have a once-in-a-generation opportunity to align policy, resources and action across government and the broader field, and change the trajectory of Parkinson’s and atypical parkinsonisms.
Over the past 26 years, we’ve seen that breakthroughs happen faster by bringing the right people together. Michael has always believed that solving Parkinson’s would take patients, scientists, industry, government and philanthropists working toward the same goal. That’s why The Michael J. Fox Foundation has focused on creating strategic partnerships that accelerate research and keep patients at the center of everything we do. I’m honored to bring those lessons to the Advisory Council at a critical moment for the field.
An Inflection Point for Parkinson’s
Parkinson’s science has changed dramatically since MJFF was founded in 2000. Today, more than 175 therapies are in clinical development, with roughly half designed to slow or stop disease progression. Researchers have also validated a biomarker that can detect the biology of Parkinson’s before many symptoms appear, opening the door to earlier diagnosis and, eventually, prevention.
We’re entering a period that would have been difficult to imagine 26 years ago. That gives us every reason to think bigger about what’s possible — and it also challenges us to ensure these advances reach patients as quickly as possible. This is where the NPP can make the greatest difference.
Matching the Pace of the Science
The NPP is a chance to pursue a clear national ambition: a future where Parkinson's can be detected earlier, treated more precisely and ultimately prevented or cured altogether. Parkinson’s is the fastest-growing neurological disease in the U.S. and globally, costing an estimated $82.2 billion in the U.S. in 2024 alone. Our response must match both the scale of the disease and the scientific momentum we’ve built.
That begins with greater federal investment in research, which today represents only a fraction of the disease’s annual cost. But research funding alone won’t close the distance between discovery and patient benefit — we also need policies that reduce delays to diagnosis, expand access to specialized care and support care partners.
For those interested in the Foundation’s recommendations for the NPP, I encourage you to read our full public comment submitted to the Advisory Council. It outlines our priorities for the Council’s consideration and is informed by what we’ve learned from working alongside the Parkinson’s community for more than two decades.
Your Input Is Essential
This is a rare moment — one that brings together scientific possibility, national focus and a community that never stops pushing for change, the same community whose advocacy helped make the NPP possible. Your continued engagement will help it meet its tremendous potential.
I hope you’ll stay involved and share your perspective. One way to do that is by joining MJFF’s Parkinson’s Policy Network, our nationwide community of advocates helping drive progress at the federal and state levels.
Together, we can ensure that the National Parkinson’s Project delivers meaningful, lasting change for everyone affected by this disease.
With gratitude,
Debi Brooks
CEO and Co-Founder
The Michael J. Fox Foundation