Parkinson's Advocacy
Progress doesn’t keep itself moving. People do.
I intended to use this post to talk about what I’m doing to manage Parkinson’s now that I have a diagnosis. But… I’m going to push that to the next post. Why? Because there’s something big going on in the world of Parkinson’s research—and it deserves a moment in the spotlight.
But first, a quick disclaimer: I’m not a SME (subject matter expert) on Parkinson’s - yet. Not even close. A diagnosis doesn’t make you smarter, so I’m learning as I go—or to use an aviation analogy, I’m flying the airplane while I build it. (Yes, it’s corny. No, I’m not sorry.)
I’m trying to get fluent in the language of Parkinson’s. As a veteran, I thought I had seen my fair share of acronyms—but the PD crowd takes things to a whole new level. So bear with me if I fumble a few.
Parkinson's by the Numbers — 2025 Edition
Sure, you could Google this stuff, but if you’re here already, let me save you a click:
1 million+ people in the U.S. are living with Parkinson’s.
90,000+ new diagnoses happen every year—and that number is climbing.
Worldwide? More than 10 million folks are living with PD.
It’s the second most common neurodegenerative disease, right after Alzheimer’s.
Most people are diagnosed around age 60, but 5–10% are diagnosed younger (that’s called young-onset).
Guys like me are about 1.5 times more likely than women to get it.
The total cost in the U.S. is over $50 billion a year. That’s billion—with a B. (I double-checked.)
What’s Being Done (Besides Me Learning Acronyms)
After years of persistence from people way more organized than I am, Parkinson’s finally got the kind of attention it deserves. On July 2, 2024, President Biden signed the National Parkinson’s Project into law. Also known as the National Plan to End Parkinson’s, it passed Congress with rare bipartisan support - which is kind of like spotting a unicorn and Bigfoot at the same cookout.
Since then, the NIH (that’s the National Institutes of Health—see, I’m learning!) took the lead. They’re working on a coordinated plan focused on prevention, better diagnosis, improved treatments, and slowing the progression of PD and related diseases.
It’s not a cure yet, but it’s progress. And that matters.
Who’s Helping Drive the Progress
The National Plan didn’t just appear out of thin air. It took years of relentless effort from advocates, researchers, and organizations that have been fighting this fight long before I even knew I had a dog in it.
Groups like the Michael J. Fox Foundation, the Parkinson’s Foundation, and the American Parkinson's Disease Association have played an enormous role, not just in raising awareness, but in influencing policy, funding research, and connecting patients with the resources they need. These organizations have helped shift Parkinson’s from something people quietly endure to something we’re actively confronting.
They’ve kept the momentum going. And thanks to their work, momentum is starting to look a lot like progress.
Let’s Keep It Moving (Because Progress Isn’t Automatic)
The signing of the National Parkinson’s Project into law was a huge milestone. It didn’t just happen. It took years of work—from advocates, caregivers, researchers, and people living with Parkinson’s—to get Congress to listen. It took countless meetings, testimonies, emails, and phone calls. It took bipartisan cooperation (yes, that still exists), and it resulted in something rare: near-unanimous support for a national plan to end a disease.
But here’s the thing about big wins in Washington: if we stop talking about them, they stop mattering.
Momentum is fragile. Without continued advocacy, the National Parkinson’s Project could easily become just another federal initiative that gets OBE—overcome by events. Budget cycles change—leadership changes. Priorities shift. And if no one’s watching, no one’s pushing, the progress could stall.
That’s why this part matters most: we have to keep it moving.
If you’ve ever wondered whether one email, one phone call, or one conversation with a member of Congress makes a difference—it does. The entire NPP is proof of that. It’s living testimony that when people speak up, lawmakers respond.
So whether you’re a seasoned advocate or someone who just stumbled onto this post, here’s my ask: Reach out to your representatives. Remind them that Parkinson’s doesn’t pause. Ask them to continue supporting the NPP and to prioritize funding, research, and coordinated care.
Because progress like this doesn’t keep itself moving. People do.
And Now, a Word About Donations (No Guilt Trips, I Promise)
There are a lot of good causes out there. I know it. You know it. We all have limited time, money, and attention—and we usually give where we have a personal connection.
For years, my connection was diabetes. That’s where my donations went. Diabetes affected my family, which kept it on my radar.
Now, Parkinson’s is in the picture. Literally—it’s in the mirror.
If you ever find yourself with a few extra bucks and you’re looking for a cause to support, I’d be grateful if you kept Parkinson’s in mind. Here are two organizations I trust to make that money count:
🧡 The Michael J. Fox Foundation – 100% of donations go directly to research.
💙 Parkinson’s Foundation – Focused on care, education, and scientific progress.
No pressure. No guilt. Just a nudge from someone with a slightly shaky hand and a lot of hope.
BLUF: (Technically, the bottom line up front comes at the beginning of the post.. In this instance, it fits better in the end.)
The Parkinson’s Project needs your help. Whether you are a PD patient, a caregiver, or love someone who suffers from PD, your voice is important. The ask is small. Please take a few minutes to send a letter or email, call, or text your elected members of Congress. Hold them accountable and request a status update on the NPP.
We’ll do what we can to help. Stay strong, Chris! We’ve got your six!