Michael J. Fox: Do you have Parkinson's? New test is 'breakthrough' in diagnosing disease.

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This week in New York City, 300 of the world’s top neuroscientists are meeting to chart the future of Parkinson's disease research. They are the leaders of the Parkinson's Progression Markers Initiative (PPMI), a major international study designed to help cure Parkinson's disease faster.

They come together every year, from points all around the globe, to share data, troubleshoot challenges and map out next steps in the research strategy. It has always been an action-packed couple of days — equal parts realistic, optimistic and futuristic — and even a pretty good time, if you dig science.

And this year, things are super-charged. The meeting’s focus has been electrified by one of the most significant Parkinson’s breakthroughs in decades, announced by PPMI and The Michael J. Fox Foundation just a few weeks ago: the discovery of a spinal fluid test that can objectively detect Parkinson’s in the cells of living people. It’s a first, and a monumental leap forward, for our disease.

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The new test is remarkably accurate (this is especially rare in brain disease). It will allow scientists to unlock some of Parkinson’s deepest-held secrets — like how early cellular dysfunction begins in brain and body cells, what other aspects of biology are involved in risk, onset and progression, and why Parkinson’s symptoms and disease course are so notoriously different in different people. This will crack wide open our ability to develop next-generation drugs that will benefit everyone living with the disease.

What’s more, we can detect the insidious biology unfolding well before any outward symptoms have shown up. (Historically, symptoms have been the first discernible sign of the disease. In my case, it was an innocent-seeming flutter in my right pinky finger.) Not only will it be possible for the disease to be diagnosed and monitored earlier, but we are standing on the threshold of being able to prevent it altogether.

The Michael J. Fox Foundation is looking for volunteers 60 and older to participate in a smell test to assist with Parkinson's research.
The Michael J. Fox Foundation is looking for volunteers 60 and older to participate in a smell test to assist with Parkinson's research.

I’m involved with the work of The Michael J. Fox Foundation in many ways, but I come to this breakthrough first and foremost as a patient. My journey, which includes being diagnosed at age 29 with Parkinson's, is portrayed in "STILL: A Michael J. Fox Movie," which will debut May 12 on Apple TV.

While I admire and marvel at the researchers leading the charge, the people I really can’t stop thinking about are the study volunteers — the thousands of everyday people, with and without Parkinson’s disease, who have stepped up, on behalf of me and every other patient, to be part of PPMI.

They’ve been coming since the foundation launched PPMI in 2010. By 2020, in partnership with the Aligning Science Across Parkinson’s initiative, we expanded PPMI to include “at risk” individuals — people who had not been diagnosed with Parkinson’s but were living with early identified risk factors. The goal was to confirm that these risk factors were connected to Parkinson’s onset.

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It’s no exaggeration to say we’ve entered a new era in Parkinson’s research. We can start answering questions that have stumped scientists, doctors and patients since James Parkinson first wrote about the disease in 1817. The foundation is moving at top speed to get the new test into immediate use in PPMI and other clinical trials recruiting today — as well as to help answer longstanding questions about Parkinson’s onset, progression from diagnosis to advancing disease, wide variability of symptoms in different individuals, prognosis and more.

Do you have Parkinson's symptoms? Newly diagnosed? Volunteers help to make this progress possible.

But just as it has been all along, the single most important ingredient in our recipe for success will be the volunteers who step up to take part in studies. And we know just who we need. If you’re about 60 or older, and your sense of smell isn’t what it used to be (not the brief loss associated with COVID-19, but serious smell loss that persists), or you’ve been diagnosed with REM sleep behavior disorder, a condition that causes people to kick, punch and yell in their sleep, you could be at increased risk of developing Parkinson’s and part of PPMI.

The same is true for those newly diagnosed with Parkinson’s. You’ll be helping us leverage this discovery to speed progress toward a cure for Parkinson’s. It’s as simple as visiting michaeljfox.org to get started.

Michael J. Fox is an award-winning actor, best-selling author, and founder of The Michael J. Fox Foundation for Parkinson’s Research. He was diagnosed with Parkinson’s disease in 1991
Michael J. Fox is an award-winning actor, best-selling author, and founder of The Michael J. Fox Foundation for Parkinson’s Research. He was diagnosed with Parkinson’s disease in 1991

Because no matter how brilliant the scientists, how well-planned the research and how many hundreds of millions of dollars we raise for PPMI, none of it can go anywhere without you — the visionary joiners sharing our optimism and agreeing to take part. Research volunteers are collectively contributing a tidal wave of time, energy and belief in a better future. This breakthrough belongs to everyone who’s already taken part, and to those who will in the future. But thanks to these activated participants, it is already transforming what’s possible for us all.

Michael J. Fox is an award-winning actor, best-selling author and founder of The Michael J. Fox Foundation for Parkinson’s Research. He was diagnosed with Parkinson’s disease in 1991.

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This article originally appeared on USA TODAY: Michael J. Fox: New Parkinson's test is 'monumental leap forward'