4 The Power of Prevention
PPMI : Our Study to Predict and Prevent Parkinson ’ s Needs You
For more than 10 years , thousands of patients , scientists and volunteers have contributed to The Michael J . Fox Foundation ’ s landmark study , the Parkinson ’ s Progression Markers Initiative ( PPMI ), leading to new findings on Parkinson ’ s symptoms and biology .
Now , PPMI is entering its next ambitious phase : enrolling more people with and without Parkinson ’ s and amplifying the community voice in search of a cure . By growing the study from 1,500 to 4,000 participants at sites around the world , and enrolling as many as 100,000 people online , we hope to gain critical information that may help in understanding who is at risk for Parkinson ’ s , who ultimately gets the disease , who does not , and why .
Many disease risks today can be predicted by a simple medical test in a doctor ’ s office , like testing your blood pressure or cholesterol level for heart disease . “ This expansion of PPMI is an enormous opportunity to understand what is happening to people prior to the onset of symptoms ,” says Ken Marek , MD , president and senior scientist at the Institute of Neurodegenerative Disorders in Connecticut and PPMI principal investigator . “ The goal , ultimately , is to be able to initiate treatment prior to the onset of symptoms , in order to prevent the onset of PD altogether .”
You Might Not Have Parkinson ’ s , But You Can Help End It
Studying people who have not been diagnosed with Parkinson ’ s , but who may be at increased risk , is a critical step on the journey to ultimately prevent the disease .
“ For me , it started by falling out of bed . Then I would be moving at night during my dreams and flailing a bit ,” says Brian Duggan , 67 , of Mill Valley , California , who was diagnosed with REM sleep behavior disorder ( RBD ) in 2015 . Soon after , he found out that he was at a higher risk for developing PD .
RBD is one of the factors now known to be associated with increased risk for PD . Other risk factors include family history of PD , specific genetic mutations implicated in Parkinson ’ s and loss of smell . By studying people with these risk factors , we may uncover clues about the earliest changes taking place in people who will eventually be diagnosed with PD . This in turn could allow us to diagnose and treat the disease earlier and , ultimately , devise strategies to prevent the disease .
“ On one level , RBD is not the same as Parkinson ’ s , but there ’ s a continuum here . My situation could be described as prodromal or early stage of Parkinson ’ s ,” says Brian .