For more than 15 years, our landmark study, the Parkinson’s Progression Markers Initiative (PPMI) has helped change how we understand Parkinson’s disease. Now, it’s entering a new chapter with a new name to match.
PPMI now stands for the Parkinson’s Precision Medicine Initiative, reflecting how far the study, and the science, has come. What started as an ambitious effort to track Parkinson’s over time is now helping unlock a more personalized approach to treatment and care.
Maggie Kuhl, who leads patient engagement at The Michael J. Fox Foundation and PPMI study recruitment, explains what this shift means and why it matters.
Let’s start broad, what is PPMI?
MK: PPMI is a global research study designed to better understand Parkinson’s: how it starts, how it changes over time and how we can stop it.
What makes it special is the scale and the spirit behind it. Thousands of volunteers have stepped forward to share their experiences, health data and samples. That information is then made available to researchers, helping to speed discoveries in ways no single study could do alone.
Visit www.michaeljfox.org/ppmi to learn how you can be a part of this new era.
You joined MJFF not long after PPMI launched in 2010. What were your expectations then compared to what PPMI has become today?
MK: In the beginning, PPMI felt bold, maybe even a little uncertain. We were asking people who had just been diagnosed to commit to years of participation, sharing deeply personal information along the way. At the time, that kind of partnership hadn’t really been done before. But people showed up. And they kept showing up.
Today, the scale is something we couldn’t have imagined back then. We’re now screening tens of thousands of people — not just those with Parkinson’s, but also those with risk factors (including those discovered through PPMI itself).
What’s stayed the same is our goal: better treatments and quality of life. What’s changed is how close we feel to getting there.
What does “precision medicine” mean for patients and families?
MK: At its core, precision medicine is about moving away from a one-size-fits-all approach.
It looks at the full picture — someone’s genetics, biology, environment and lifestyle — and uses that information to guide care. For people with Parkinson’s, that could mean earlier detection, more accurate diagnoses and treatments that are tailored to the individual.
And importantly, it gives us a better shot at success. When we understand the differences between people and the disease itself, we can design treatments that are more likely to have a meaningful impact.
What encourages you the most about this new era of Parkinson’s research?
MK: For me, it’s the sense of momentum and hope. It’s beyond collecting data. We’re connecting the dots in ways that are helping identify biological changes earlier, define different forms of the disease and build a clearer path toward targeted treatments.
That progress creates real optimism. The goal of precision medicine — getting the right treatment to the right person at the right time — feels more tangible than it ever has before.
And the momentum reminds us that what we’re working toward is possible.
Why should I join PPMI?
MK: One of the things I hear most from participants is how meaningful it feels to be part of something that’s giving back. This study is changing what Parkinson’s looks like for people today, for those who may be diagnosed tomorrow and for the next generation.
I hear, too, that Parkinson’s takes a lot, and that feeling of losing control is very real. It hits people who are diagnosed but also family and friends. Joining PPMI is a way to do something: to contribute, to move science forward, to be part of progress.
Do you have a favorite PPMI moment from the past 15+ years?
MK: Each year, MJFF hosts more than 30 appreciation events for PPMI participants, usually a dinner or luncheon. I try to make it to a handful of them; they’re some of my favorite moments. It’s a chance to share with these partners what their participation has made possible, hear their stories and just say thank you.
Those gatherings are a good reminder that behind every data point is a person who chose to show up for this work — and that’s what makes all of it possible.
