If I told you a simple action you take today could change everything about how Parkinson’s disease is diagnosed, managed and treated – not decades from now, but in the near future – would you do it?
I don’t mean giving money. (Though that helps, too. Research is unbelievably expensive.)
And I’m not talking just to the people who, like me, are living with Parkinson’s disease.
On Thursday, The Michael J. Fox Foundation and a “who’s-who” of Parkinson’s researchers are announcing a clinical study that promises to rewrite the future of Parkinson’s disease and to generate breakthroughs that could impact other major brain diseases such as Alzheimer’s, too. I’m asking you (yes, you) to be part of it.
The Parkinson’s Progression Markers Initiative was launched in 2010. Since then, PPMI has studied 1,400 people like you, with and without Parkinson’s disease, in the United States, Europe, Asia and Australia.
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These heroes are giving qualified scientists access to their anonymous clinical information, including test results and brain scans, to hunt down patterns and details that have already contributed significantly to a better understanding of Parkinson’s. To date, more than 250 scientific papers based on PPMI data have been published, and researchers around the world now access this data for independent studies on average 2,200 times a day.
Predicting Parkinson's early on
Now the study is entering a new stage – bringing us much, much closer to the ability to predict who might get Parkinson’s before symptoms ever show up. When you can predict who’s going to get a disease, you’ve already started down the path to preventing it.
And this is where you come in. We’re on a mission to solidify our early understanding of who’s at risk for Parkinson’s, who gets it, who doesn’t and why. But this requires a new level of public participation – 100,000 people – to help researchers build on what’s already known about the early signs of Parkinson’s, ones that we’ve observed but haven’t yet pinpointed scientifically.
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For example, did you know that people who act out their dreams while sleeping might be more likely to develop Parkinson’s?
PPMI has helped scientists zero in on this discovery and now aims to take it to the next level. This kind of finding can give us a critical window into processes taking place in the brain and body cells of people who don’t have Parkinson’s today but might be at risk to get it in the coming years. And that could move us closer to new and better treatments for the disease – or even preventing it altogether.
How you can help
Participating in the study is simple. The expansion is underway now in the United States and will soon come to other countries. For most people, it’s as easy as filling out questionnaires online every few months. The longer you keep doing it, the more your profile can offer to research. And because privacy is critical, we’ve taken every step to safeguard the personal data you share with researchers.
There was no PPMI when I was diagnosed in 1991. The doctor told me I had Parkinson’s and 10 years left to work, all in the same sentence. (He was wrong about that second part.)
I’m sure he wished there were some treatment that would have stopped the disease process right then and there, so I could move on with my life and never think about Parkinson’s again.
With your help, that’s where PPMI is headed.
The Michael J. Fox Foundation has been at this work for 21 years. To patients, including me, that feels like a long time, but in scientific terms it’s the blink of an eye. It’s why we need to stay focused on the day we find a cure. With your help, we’ll get there. Until then, we’re persistent, we’re problem-solvers and we’re optimistic – and grateful to you for being part of it.
Michael J. Fox, founder of The Michael J. Fox Foundation for Parkinson’s Research, is author of "No Time Like the Future: An Optimist Considers Mortality."
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This article originally appeared on USA TODAY: Michael J. Fox: Help predict who's getting Parkinson’s and cure it