Poughkeepsie, New York, is almost a two-hour drive from New Haven, Connecticut. Bob Hankin, a 77-year-old semiretired homebuilder and land developer, makes the trip twice a year to participate in the MJFF-led Parkinson’s Progression Markers Initiative (PPMI) at the Institute for Neurodegenerative Disorders in New Haven, one of 32 study sites conducting the study.
While Bob doesn’t have Parkinson’s himself, Marilyn, his beloved wife of 53 years, was diagnosed with the disease 18 years ago. Bob has taken part in multiple research studies as a healthy volunteer, or control.
“There’s no question that participating in clinical research, especially in those studies where we’re both involved, makes our bond stronger, and it certainly makes me feel better doing whatever I can to make my wife’s life better,” he says. Bob says he likes the access to top physicians and scientists at the cutting edge of research because “the quality of care is superb,” and they are informed teachers about the disease and the state of the science.
He feels so strongly about the role clinical research plays in the pursuit of a Parkinson’s disease cure that Bob encourages others to participate. PPMI recently launched a new study arm looking for 100 people with known PD risk factors, such as smell loss, to identify biological markers of early disease. Since most people with smell loss don’t know they have it, PPMI is asking anyone 60 years or older without Parkinson’s to take a smell survey. Bob has handed out hundreds of promotional postcards at senior events encouraging his peers to take the survey and participate in the study if eligible.
“The ultimate goal here is to find a cure, and, short of a cure, find the best way for my wife — and the millions of others with Parkinson’s — to live and manage the disease until the cure is available. You’re only going to find that through clinical research,” says Bob.
Learn more about the PPMI smell loss study and take the survey at michaeljfox.org/takethesmellsurvey.