With Renewed Optimism: A Patient Advisor’s Hopeful Perspective on Parkinson’s Research

Kevin Kwok, an advisor for The Michael J. Fox Foundation (MJFF) and an advocate for people with Parkinson's, wrote in a recently published article that Parkinson's drug development is like "cave exploration in the dark," but he adds that 2023's biomarker finding is the lantern we need to illuminate the cavern. His powerful commentary was published in Clinical and Translational Science in July 2024, and it details his current view on the field of Parkinson's research.

Kwok brings an interesting perspective to Parkinson's, both as a former biopharmaceutical executive and as a person with PD. His advocacy has touched organizations ranging from research non-profits to government regulatory agencies, and his outlook speaks to the important advances made in the last few years.

Kwok has been living with Young Onset Parkinson's Disease since 2009, and since then, he's immersed himself in patient advocacy, including providing important testimony to the FDA. Reflecting on his experiences, Kwok states:

"On a Fall day [in 2015], I traveled to Washington DC, and had the fortune of addressing the US Food and Drug Administration (FDA) representing the Parkinson's community. As a career biopharma guy, this was the first time I participated with the FDA in this patient capacity. It was humbling and emotional."

Since then, his experience has evolved significantly. He writes:

"For those who only saw me at that 2015 FDA meeting, you might not recognize me today. My symptoms have devolved from manageable muscle rigidity and bradykinesia to debilitating off periods where I am incapacitated and physically frozen until my polypharmacy dosing regimen kicks in"

In that time, Kwok has served on multiple patient councils, including MJFF's. He's also an active participant in clinical trials, including being one of the first people to test deep brain stimulation as a treatment protocol as well as a volunteer research subject for closed loop "adaptive DBS," which could be a significant upgrade.

Kwok frames his commentary article around the Parkinson's Progression Markers Initiative (PPMI) annual meeting. PPMI led to the validation of the first biomarker for Parkinson's disease, which allows researchers (and even potentially clinicians) to identify the biological hallmark of PD years before symptoms begin. That biomarker, the "lantern" Kwok referred to in his cave metaphor, has helped renew Kwok's enthusiasm for the future. He points out that it has driven other important conversations, such as the potential for staging Parkinson's disease based on biology and the implications for new clinical trial designs.

In his commentary article, Kwok also emphasizes the significance of Patient Focused Drug Development (PFDD), which aims to incorporate patient perspectives into the drug development process. He notes that the patient voice has shifted from being a token afterthought to a central element in translational research and early development decisions:

"PFDD is a shift in corporate culture where patient need is central. This patient centric culture is advancing."

Despite the ongoing challenges, Kwok expresses reinvigorated hope and encourages newly diagnosed patients to engage with emerging research opportunities as well as opportunities to share the patient voice.

Kwok concludes with his feelings on working toward a cure:

Meanwhile, as a Parkinson's patient I still continue to wait, but with renewed optimism.

The Michael J. Fox Foundation often relies on patient advocates to share the important voice of people and families with Parkinson's. We encourage you fill out an interest form for sharing your story here.

And if you're interested in potentially participating in research through MJFF's flagship PPMI study, you can learn more here.

For more detailed insights, you can read the full paper here.

• David Kumbroch

  Senior Science Writer