Michael J. Fox on how far Parkinson’s research has come: ‘We don’t want to be celebrated. We want to get things done’

When Michael J. Fox was diagnosed with Parkinson’s disease at age 29, his clearest symptom was a small one — his pinky finger was twitching. But even by that stage, 70% to 80% of a patient’s dopamine-producing cells are already gone, Fox said.

“What happens in that time, that shadowy place?” Fox said, referring to the period before his pinky finger first started twitching. Thanks to advances in Parkinson’s research, he said while speaking virtually at the STAT Summit in Boston on Thursday, “We can solve that now, we can answer that question — we can say here’s what’s happening, and here’s where we stop it.”

About half a million Americans have been diagnosed with Parkinson’s, but experts estimate that perhaps twice as many people actually have the disease, given the prevalence of misdiagnoses and missed diagnoses. Fox likened the clinical measures used to diagnose him with Parkinson’s decades ago to a drunk driving test. The live audience laughed as he pointed each index finger to his nose, the way police have long asked intoxicated drivers to do.

Research around the disease has improved markedly in the last few decades, in no small part thanks to Fox’s financial support through the Michael J. Fox Foundation for Parkinson’s Research. In April, research published in the Lancet Neurology and funded by the Foundation identified a biomarker for Parkinson’s in a particular protein. A spinal tap is needed to detect the biomarker, but researchers called the finding “a game changer” for both diagnostics and potential treatments for the disease.

Deborah W. Brooks, CEO and co-founder of the foundation, also spoke virtually at the STAT Summit, noting that the ability to identify Parkinson’s an entire decade or more before symptoms begin could have major benefits for patients. “This is a big shift of opportunity to have the beginnings of a biological staging system for Parkinson’s disease and Lewy Body syndrome,” Brooks said.

The foundation has funneled hundreds of millions of dollars into the research on a biomarker since it began in 2010. For Fox, the exact science underpinning the research isn’t always easy to understand, but he’s come to find that as a patient and an advocate, understanding it isn’t necessarily his job.

“It got to a point where it was like: I don’t have to know it. I have to know that they know it,” Fox said. Early on in his journey with the disease, Fox was told that the science was ahead of the money that funds it. “That’s something I can grasp,” he said.

Fox has little interest in being a hero. He spoke directly to the pharmaceutical executives who were in the room at the summit and attending virtually: “We don’t want to be famous. We don’t want to be rich. We don’t want to be celebrated. We want to get things done.” He urged people to come to the table with their expertise, money, and manpower to continue building on the research that’s already been done.

Any drugmaker stands to benefit from participating in research on Parkinson’s, Brooks said. Over 30 companies partner with the foundation on its main clinical study, the Parkinson’s Progression Markers Initiative. “We’re representing the dreams and hopes and risk profile of Parkinson’s patients,” Brooks said.

Catherine Ames, a patient advocate and writer, told Fox that her father had recently been diagnosed with Parkinson’s, after their family noticed his handwriting on birthday cards getting less and less legible over the years and urged him to see a doctor. While there’s been much progress in early detection of the disease, Ames wondered what hope there was for people like her father who receive later diagnoses. “I would like to hope my dad will walk me down the aisle,” she said.

Fox responded that one of his own daughters is getting married next year, and he looks forward to being there. “I won’t dance well, but I will dance,” he said. “I was diagnosed in my late 20s, and 35 years later I’m still here. There’s something to be said for just pluck and optimism.”

You can watch the full recording of this session at the 2023 STAT Summit below: