Earlier this summer, before the National Parkinson’s Project Advisory Council met for the first time, I wrote about the once-in-a-generation opportunity before our community. As the Council prepares to meet again on August 24, I’ve been reflecting on what I’ve heard and how it can guide our decisions.
What We Heard from the Community
Since the first meeting, the Council has received more than 160 public comments from community members who shared their experiences, concerns and hopes. While each story was deeply personal, common themes emerged: diagnostic delays, limited access to movement disorder specialists, the daily realities of advancing symptoms and the growing responsibilities shouldered by care partners. Many called for therapies that slow or stop disease, greater attention to financial strain and more support and services to help people remain independent.
Each account helps bring the full Parkinson’s journey into view. For many, years can pass between Parkinson’s earliest effects on the brain, the onset of symptoms and an accurate diagnosis. The disease also presents differently in every person and continues to evolve as symptoms progress.
Together, these experiences reinforce what we’ve learned over 26 years at The Michael J. Fox Foundation (MJFF), and they make clear what the National Plan must deliver: earlier answers, better treatments, accessible care and tangible support for families.
How We’re Organizing the Work
At the first meeting, the Council reviewed existing federal Parkinson’s programs and discussed principles for the National Plan. We also organized two subcommittees: the Care, Services and Supports Subcommittee and the Research and Regulatory Programs Subcommittee, the latter of which I’ll serve as non-federal co-chair.
The subcommittees identified three anchors for early planning: what the National Plan to End Parkinson’s Act requires, the needs people face throughout the course of the disease and the top priorities for coordinated action. Scientific evidence and lived experience will inform every part of the process, helping us identify gaps, evaluate ideas and focus our efforts where national leadership can make the greatest difference.
What Building Shared Infrastructure Can Do
We’ve already seen what’s possible when the Parkinson’s community comes together to invest in shared resources and tools. In 2010, the Foundation launched the Parkinson’s Progression Markers Initiative (PPMI) around a core premise — the field moves faster when patients, researchers, institutions and data are connected. Today, over 50,000 PPMI volunteers submit data online and 5,000 contribute biological samples in person across 50 global sites — making PPMI the world’s largest open-access Parkinson’s data and biospecimen library.
This initiative helped enable the 2023 biomarker breakthrough: the ability to detect Parkinson’s biology in living people before symptoms appear. That advance ushered in PPMI’s new chapter as the Parkinson’s Precision Medicine Initiative, bringing us closer to a future where the right treatment reaches the right person at the right time.
MJFF’s Strategic Research Agenda (SRA) applies that same connected approach across four pillars: Clearer Diagnosis, Better Treatment Pipelines, Faster Clinical Trials and Catalyzed Communities. While PPMI and the SRA are distinct from the Council’s charge, both help us see what we can achieve when infrastructure unites people, knowledge and systems: Scientific discovery gets to the people who need it.
What’s Next for the Council
With that in mind, I’m looking forward to the Council’s next public meeting on August 24, which anyone can tune into. The subcommittees will present their work to date, and organizations — including MJFF, represented by Chief Policy and Government Affairs Officer Dan Feehan — will offer their perspectives. I’m eager to hear from groups with strong local roots, including the Parkinson Association of Alabama, a member of the Foundation’s Unified Parkinson’s Advocacy Council. Their on-the-ground experience can help ensure the National Plan works for people in every community.
As the Council reconvenes, our task comes into sharper focus: turning what we’ve heard into a plan with clear measures and accountability. During the meeting, I’ll be asking: Where can we make the most meaningful impact? Who needs to be at the table? And how will we know whether people’s lives are improving?
Your role in this work matters more than ever. I hope you’ll stay engaged, listen in to Council meetings and keep making your voice heard.
As Michael has said, “When the cure for Parkinson’s is found — and it will be — it will be because of all of us.” Together, we’ll build a plan that turns scientific progress into meaningful change in people’s daily lives and moves us closer to a future without Parkinson’s.
With gratitude,
Debi Brooks
CEO and Co-Founder
The Michael J. Fox Foundation