6 PPMIonline . org
PPMI Needs People with and without Parkinson ’ s
Our landmark Parkinson ’ s Progression Markers Initiative ( PPMI ) wouldn ’ t be where it is today without its dedicated study volunteers . More than 1,400 volunteers — with and without PD — have been contributing data at 33 sites throughout the study ’ s first decade . Now the study has expanded with a goal of enrolling 4,000 at nearly 50 sites across the world and as many as 100,000 online .
The study is looking for people who have not been diagnosed with Parkinson ’ s , but who may be at increased risk , which could help researchers better uncover who ultimately gets the disease , who does not , and why . Additionally , the study will continue to enroll those recently diagnosed with Parkinson ’ s and unaffected to better understand the variability of the disease and look for measurable differences from normal aging . Here , we highlight some of those participants speeding a cure .
Rick Grant , 57 , of Bel Air , Maryland , a vice president at an advertising agency , was diagnosed with Parkinson ’ s disease in 2018 . Shortly after his diagnosis , he found his way to PPMI at the University of Pennsylvania . He has been participating in the study ever since . “ I ’ ll be here fighting until I can ’ t ,” says Rick . “ And if it means my son and daughter — or anyone ’ s son and daughter — don ’ t have to go through this , it ’ s all worth it .” On page 8 , read about the importance of participating in research in the first year after diagnosis , before beginning medication .
Gayle Larson , 64 , a gardening teacher from Seattle , Washington , does not have Parkinson ’ s , but her mom does . That , along with her Ashkenazi Jewish heritage , made her eligible for genetic testing as part of the PPMI screening process . After finding out she has a LRRK2 mutation , she enrolled in PPMI to advance understanding of what may lead to PD or what may protect others from it . “ I like that the data is made available to researchers ,” says Gayle . “ I ’ m glad to be a part of science and doing something positive to help .”