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Real Talk from Participants

People with Parkinson's and control volunteers share their advice and perspective on joining clinical studies and being an active participant in the quest for a cure.


  • Hiking

    My Research Journey: Finding Information and Optimism

    Wanting for hope and direction after an RBD diagnosis, Cindy Roach found our PPMI study.
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  • Bill Bucklew smiling

    An Open Letter from Someone With Smell Loss

    MJFF Patient Council member shares his experience with smell loss, which can be an early signal of Parkinson’s disease.
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  • Marcy Schaeffer

    My Research Journey: Doing my Small Part to Support People with Parkinson’s

    Marcy Schaeffer, 68, is a volunteer in the Foundation’s landmark Parkinson’s Progression Markers Initiative (PPMI). She lives with smell loss, which can be an important signal of risk for Parkinson’s…
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  • Allen in Venice

    My Research Journey: How an RBD Diagnosis, Not Parkinson’s, Led to Joining a Landmark Study

    Allen Dance shares his experience with REM sleep behavior disorder and how it led him to the Parkinson’s Progression Markers Initiative.
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  • Mike Kinnett headshot

    My Research Journey: Why I Raised My Hand to Participate Shortly After Diagnosis

    Sometimes, a long-awaited diagnosis can lead to a certain sense of relief. For Florida resident Mike Kinnett, age 66, the confirmation of a Parkinson’s diagnosis answered several lingering questions,…
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  • Hyam and Tom Kramer

    My Research Journey: “Hope begets more hope”

    Hyam Kramer, 62, explains why he joined the premier Parkinson’s research study shortly after receiving a Parkinson’s diagnosis.
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Join the Study that's Changing Everything

The Parkinson's Progression Markers Initiative is changing how patients, families, doctors and scientists think about brain disease. Now it needs you.

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