It’s been a long time since there was good news about Parkinson’s disease, a neurodegenerative condition that affects more than 8 million people worldwide. But that changed this year, thanks in part to Fox’s perseverance in raising awareness and pushing scientific boundaries in search of a treatment. More than two decades after he created the Michael J. Fox Foundation for Parkinson’s Research, the charity-funded organization is seeing its thoughtfully chosen research efforts pay off. Last year, data from the foundation’s Parkinson’s Progression Markers Initiative (PPMI) helped scientists discover a biomarker for the disease that led to the first Parkinson’s test, which detects abnormal forms of a protein called alpha synuclein—even before symptoms appear. It is also funding ongoing studies of multiple promising treatments that will hopefully address the disease’s root causes.
Chances are, none of this would be happening at this speed had the actor not decided to share his diagnosis and raise awareness of the dire need for basic research into Parkinson’s. He was diagnosed in 1991 at age 29, but kept it secret until 1998, unsure of what impact his disclosure would have, both on his personal life and on the Parkinson’s community. But he realized that “with me as a touchpoint, it provided the opportunity to raise the profile of the disease and open the door to get some questions answered,” he says, and started the foundation in 2000. “We’ve systematically kicked doors open one by one.”
With the new test, it will now be easier for researchers to identify Parkinson’s patients at earlier stages and test potential therapies to see if they have an effect on the disease-causing alpha synuclein protein. Fox says he feels that momentum building, and along with it, a responsibility to other patients. “The more I feel it, the more humbled I am, and the more daunting it is,” he says of the work yet to be done. “The dream is to say to someone, ‘You have Parkinson’s. Take this.’ And we have the dream in our sights now.”
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