Attending the Policy Forum in Washington, DC with the Michael J. Fox Foundation was something I’ll carry with me for a long time. Being in a room filled with patients, care partners, clinicians, and advocates—all there for the same reason—was both powerful and deeply humbling. Hearing these stories brought a different kind of weight to the reality of Parkinson’s disease, one that goes far beyond what we see in the clinic. I spoke with a patient who has spent years navigating daily fluctuations and life with DBS—where even something as simple as getting through an airport now requires planning and accommodations. I met a widow who lost her husband to young-onset Parkinson’s just last summer, their future taken from them far too soon. I spoke with a young mother trying to imagine what life will look like as she raises her children while living with this disease. I also met a researcher whose funding was cut—delaying progress that so many are depending on. And over and over again, I heard how Parkinson’s quietly takes away careers, independence, and pieces of identity. It left me with a heavy but clear realization: this work matters—but right now, it’s not enough.
One of the biggest takeaways was how essential advocacy truly is. Change doesn’t only happen in clinics or research labs—it happens when these stories are brought directly to the people who shape policy. Walking to Capitol Hill alongside this community, sharing these experiences, and pushing for better funding, access, and support felt incredibly important. It was a reminder that one voice matters—but a collective voice is impossible to ignore. Walking away from the forum, it felt clear that telling these stories and staying engaged in advocacy isn’t separate from the clinical work—it’s a critical part of it. That’s how we create real change for everyone living with Parkinson’s disease. Because at the end of the day, I want to be able to look my patients in the eye and know—without question—that we left nothing on the table in the fight to help them.
With appreciation,
Cheryl Kyinn
On behalf of the AMDAPP Executive Committee
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