off the sidelines

April is Parkinson’s Awareness Month.

For a long time, I kept my relationship to this month at a distance. Indeed, I kept my relationship to this disease that is continually taking over my body, at a distance. It felt like something that applied to people whose lives looked very different from mine. But over the past year, and especially over the past month, that has changed. This April feels more personal, more urgent, and more complicated than ever.

Last month, I was in Washington, D.C. for work when I received a last-minute invitation to join the Parkinson’s Policy Forum. I said yes without knowing at all what to expect. What I walked into was four days that challenged me, grounded me, and, in many ways, changed me.

It was the first time I had ever been around so many people living with Parkinson’s disease. It was also the first time I had really spent any time with care partners–– mostly spouses, but a few other loved ones who are intimately affected by this disease as well. I was part of a 21-person delegation from Colorado. As usual, I was almost always the youngest in the room, yet at the same time was also often the person having lived with this disease the longest. That’s something that always makes me feel a little strange and a lot sad.

I’m used to being in policy spaces. Advocacy is what I do professionally. But this was different. This time, I wasn’t speaking on behalf of a population I worked with or learned from or studied; I was the story. I was the one with lived experience. That shift, from observer to participant, was in some ways empowering, but undoubtedly deeply emotional.

It was a lot.

My boyfriend had to work so he wasn’t able to come with me that weekend, and there were moments I felt that absence acutely. But I was also struck by how much support existed in that space. The Michael J. Fox Foundation for Parkinson’s Research and the other organizations that helped organize the Forum created something incredibly thoughtful, professional, and intentional. What stayed with me most after those four days was this: there are a lot of people working hard to have my back.

People are dedicating their careers to advancing research, pushing for better treatments, and advocating for policies that could change the trajectory of this disease, for me, and for millions of others. That realization mattered more than I expected. It also made something else clear: this is just the beginning of my own advocacy.

The Forum included specific policy “asks” which were important, targeted changes that we brought to congressional offices. But as I think about what comes next for me, I keep coming back to three broader areas where I want to focus my energy.

1) Spreading awareness about what Parkinson’s actually is. There is still so much misunderstanding about this disease. Parkinson’s affects young people, it affects women, and it affects people who are active and otherwise healthy. It is not just a tremor or a movement disorder. It is a complex, full-body disease with more than 40 symptoms, many of them invisible. Most people also don’t realize that it is generally not genetic. Increasingly, research points to environmental toxins as the main cause. Think about that, we can prevent this for most people. And perhaps most striking: there is still no treatment that slows or stops the progression of the disease. Not only is there no cure, there is no disease-modifying therapy at all. The medications we rely on today help manage symptoms temporarily, but they do not change the course of the disease and, the primary drug we use was discovered in the 1950s. 70 years ago! Imagine what has changed since then, yet we can't come up with better treatments?! We are well-overdue for some breakthroughs.

2) Highlighting that the systems we should be able to rely on are not built for this. Our healthcare system, disability system, and broader social safety net in the United States are not designed for people living with chronic, progressive diseases like Parkinson’s. When I was diagnosed, I didn’t have the option to step back and focus on my health which I am sure would have made a big difference in the speed of my progression. I needed to keep working. I needed health insurance. I needed an income. Being public about my diagnosis didn’t feel possible at the time, not because I didn’t want to, but because the risks were too high. That shouldn’t be the reality. Health insurance should not be tied to employment, and disability systems should not require people to prove they are incapable of anything before they receive support. There should be space to live, work, and manage a disease like Parkinson's at the same time. These issues have perhaps been the most challenging for me and have affected my day-to-day life the most. In recommending treatment, if your doctor tells you that the best solution for you is to move to another country, you know there are serious problems with our healthcare system. I know the system is incredibly complex and difficult to change, but something has to. For people like myself battling Parkinson's disease, we should be spending our time maximizing our health and functionality, not navigating, or more aptly battling, these deeply flawed systems.

3) Demanding funding that matches the scale of the problem. Parkinson’s is the fastest-growing neurological disease in the world, and yet funding for research does not reflect the scale or urgency of that reality. If we want better treatments, certainly if we want anything that resembles a cure, we need sustained, significant federal investment in research. Not incremental change, but funding that matches how many people are affected and how quickly that number is rising. This is not a distant or abstract issue. It is already reshaping lives, families, and communities across the country—and it will only accelerate without meaningful intervention. We have seen what is possible when the government treats a health crisis with urgency: breakthroughs happen, timelines shrink, and hope becomes tangible. Parkinson’s deserves that same level of seriousness and commitment.

Which brings me back to my first point: people need to know that Parkinson’s is both devastating and growing rapidly. And once they know, they should expect—and demand—that our leaders respond accordingly.

In front of the Capitol with Pat and Dena Morrissey from Durango, Colorado, March 2026

I left DC exhausted, both physically and emotionally, but also with a sense of direction I didn’t have before. This experience didn’t just connect me to a community, it began to help me find some sort of role within it.

I will always hate that Parkinson’s is part of my life and that it’s something I need to advocate about. That is the truth. But if this is my reality, and the reality of millions of people around the world, then it is time for me to act. It is time for me to put aside my desire to present myself as the put-together, with-it, woman who is living her best life and instead, share my vulnerability, the messiness and the shitshow that is this disease...oh, and share my skills too. I want to use the expertise I have—the same expertise I’ve used throughout my career—to push for something better. For more awareness. For better systems. And for real and urgent investment in solutions.

April is Parkinson’s Awareness Month. For me, April 2026 is also the month where something shifted from living with this quietly to beginning to speak up about it more intentionally. And for better or for worse, this is just the start.