The following story appeared in our Spring/Summer 2021 edition of The Fox Focus on Parkinson’s newsletter. For this story and more, download the full edition.
For more than 10 years, thousands of patients, scientists and volunteers have contributed to The Michael J. Fox Foundation’s (MJFF) 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. He recently scheduled his screening visit at the University of California, San Francisco, PPMI study site.
Editor’s Note: People with RBD can contact a PPMI site to learn more about joining the study.
Your Golden Opportunity: It’s Never Too Early to Participate
The Michael J. Fox Foundation (MJFF) regularly hears from people with PD who didn’t learn soon enough that their early participation in research, often before they were treated with PD medications, held particular value to drug development research. In fact, many wish they had asked their doctor for information on research participation when they were diagnosed. People in this fleeting window are in a unique position to contribute to research and help scientists capture the full picture of Parkinson’s.
“It’s never too early to make a difference,” says Phil Alongi, 67, of Monroe, New Jersey, a former NBC News producer who was diagnosed with PD in 2019. A year later, he joined PPMI at the Institute for Neurodegenerative Disorders study site in New Haven, Connecticut.
“This has helped me learn more about PD and be involved with people who know the latest research. If something comes out of this that benefits me, that’s great. But I’m just as happy to help scientists find a reason this happened, or why certain people have it and others don’t,” says Phil.
PPMI is recruiting individuals recently diagnosed with Parkinson’s and age- and gender-matched control volunteers. It also is transitioning its more than 1,000 prior participants (who have now been living with PD for as long as 10 years) into the next phase of the study.
Today, whether you have Parkinson’s or not, you can get started by taking a short survey online at www.michaeljfox.org/ppmi. More women tend to volunteer — but the study needs the majority of its 100,000 participants to be men aged 60 and up. Encouraging your brothers, fathers, grandfathers, uncles and friends to get involved is the first step.