My Address to the Federal Parkinson’s Advisory Council

Yesterday, November 9, the federal Advisory Council on Parkinson’s Research, Care, and Services (ACPRCS) convened in Washington, D.C. Mandated by Congress under the National Plan to End Parkinson’s Act, this Council is charged with delivering formal recommendations to the HHS Secretary on how the federal government should direct Parkinson’s research and care.

I was invited to participate on the morning panel, “Better Understanding of PDRD Biology and Genetic Risk,” alongside colleagues from the Aligning Science Across Parkinson’s (ASAP) network, the Global Parkinson’s Genetics Program (GP2), Massachusetts General Hospital, NIH/NINDS, and CND Life Sciences.

When the session guidance arrived the week prior, the architecture of the day, and the role assigned to the patient voice within it, was unmistakable. While the scientific panelists were slated for multi-part discussions on data infrastructure, subtyping, and cross-disease genetics, my name sat at the bottom of the run-of-show, in the final minutes before the lunch break, with a single directed question:

“An individual’s genetic risk profile only partially explains if they will develop PD and what they will experience as disease progresses. What more would you personally want the field to understand about person-to-person variability? (This could be a good lead-in to discussing the need for more disease-agnostic studies)”

Ahead of the meeting, I wrote to the organizing team and my fellow panelists to let them know I would answer the variability question as asked, but that I also intended to address what the structure of the agenda itself was modeling.

Look at the finalized agenda for the entire day on the official NINDS meeting page. Yesterday’s five scientific sessions comprised 38 presenter and panelist slots, including a morning session titled “When Research Reaches People: Real-World Success Stories” that featured zero patients on stage. When I raised this prior to the meeting, the organizers offered to move my single question from the end of the panel to the beginning, and noted that across the day’s sessions, aside from our session moderator, Council member Israel Robledo, three other panelists carried upstream genetic risk or prodromal markers.

That distinction goes to the heart of why our research priorities are out of balance. Across 38 slots in five research sessions, there were three panelists carrying upstream risk or prodromal markers, and only one invited panelist across the entire day actively living with manifest Parkinson’s disease.

The research apparatus has become so fixated on upstream genetic risk and prodromal biomarkers that people actively living with progressing disease have been crowded out of the frame. Treating prodromal risk as interchangeable with manifest disease, and slotting the lived reality of this condition into a single question before lunch, is not a symptom of bad scheduling. It is a reflection of how the field allocates its attention and its capital.

Watch the proceedings below (captured from inside the room by fellow advocate Esther Labib-Kiyarash while we await the official HHS broadcast archive), and scroll down for the full, lightly edited transcript of my remarks.

Transcript of My Remarks (November 9, 2026)

First a quick note, having Parkinson’s comes with many gifts, one such is dysarthria which has been getting worse in me lately, which makes giving talks such as this particularly unnerving, but hopefully you’ll be able to bear with me because this is all very personal and I do have quite a bit to say.

Israel, you asked what I’d personally want the field to understand about why genetics only partially explains this disease. I’ll answer that not just as someone diagnosed with Parkinson’s at twenty-nine, but as a GBA1 carrier working for one of the largest exclusively GBA1-Parkinson’s organizations on earth. Nobody on this panel would say so. Knowing my GBA1 status wouldn’t have told you I’d get this disease in my twenties, or what my progression would look like.

The problem isn’t what the field believes. It’s what the field builds. We build cohorts around narrow genetic risk, we build trials around broad clinical labels, and when two people with the exact same GBA1 variant progress in completely different directions, we treat that variability as statistical noise. But the variability is not noise around the disease. The variability is the disease.

One label covers many diseases, and yet we keep studying the label. The downstream biology driving our progression doesn’t respect clinical labels. So stop designing studies around the label and start designing disease-agnostic basket trials around shared biology.

I want to name what is happening on today’s agenda because it is exact evidence of why the field is stuck. Look at the five scientific sessions today, including a morning session called ‘When Research Reaches People’ that had zero patients on stage. Across 38 presenter and panelist slots in today’s five research sessions I am the only invited panelist actually living with manifest Parkinson’s disease. And I was given one directed question in the final slot before lunch.

But treating upstream genetic risk and prodromal markers as a substitute for people actively living with progressing disease, and giving manifest disease one question right before lunch, is not a seat at the table. It is a photograph of one.

And the field allocates its money the exact same way it built today’s agenda. As Andy put it well in our pre-meeting discussion: resources are limited. Yet our final session today is still titled ‘Getting More Shots on Goal.’ We have locked ourselves into a cure trap. When resources are finite, why are we pouring everything into a hundred siloed, molecular ‘shots on goal’—science for scientists, where an isolated biomarker moves, a press release goes out, and the field declares victory while not a single patient’s day gets better? And when our trials do bother to measure the patient, what do we use? The UPDRS, a subjective, noisy, fifteen-minute snapshot of someone tapping their fingers in a clinic once a quarter, is completely blind to the life we actually live with this disease. Meanwhile, we starve the treatment modalities available today—aggressive physical therapy, holistic rehabilitation, and patient training—that we know for a fact delay functional onset and progression.

So here is my ask for your formal recommendations to the HHS Secretary and Congress: Since resources are limited, stop funding siloed labels and isolated science for scientists.   First, put federal dollars into building multidisciplinary care and trial centers—hubs that deliver the physical, holistic, and rehabilitative therapies we know change disease trajectory today, while running disease-agnostic basket trials under the exact same roof. Second, retire the UPDRS as our gold standard and mandate endpoints that use continuous, real-world digital telemetry alongside patient-reported outcomes to capture whether a patient’s daily life actually changed. Judge every dollar of this work by one metric: whether someone living with these diseases can live a little better tomorrow than they can today.

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Immediately after I finished speaking, just after the recording above ends, the microphone went to Deborah Brooks, CEO of The Michael J. Fox Foundation and Co-Chair of the ACPRCS Research and Regulatory Programs Subcommittee. While acknowledging the appeal of multidisciplinary care-and-trial hubs, her immediate pushback centered on cost: That’s expensive—who pays for it?

That question captures the central blind spot of our current research economy.

Over the past two decades, our leading institutions have raised and deployed billions of dollars, and continue to commit hundreds of millions of dollars every year, into siloed clinical trials, upstream biomarker discovery, and molecular “shots on goal” that have yet to materially alter day-to-day life for people living with this disease. Nobody in that room asks “who pays for it?” when another nine-figure sum is committed to surrogate biomarkers programs or disease modifying single-label pipelines.

Yet the moment we propose redirecting finite public and philanthropic capital toward infrastructure that combines cross-disease clinical trials with the rehabilitative and multidisciplinary care proven to delay progression today, cost suddenly becomes a barrier.

The money is already in the building. The question facing this Council, and the recommendations it sends to Congress and the HHS Secretary, is whether we will keep spending it on the architecture of the last twenty years, or build something that actually serves the people living with this disease today.

Special thank you to Esther Labib-Kiyarash for capturing the video above from inside the room, and for convincing me to attend.