12 Fox Focus | Research
Reflections from a Repeat Research Volunteer
By Gary Rafaloff
I WAS DIAGNOSED with Parkinson’ s disease in 2012. Like most people, I was left reeling with uncertainty and confusion. Probably unlike most people, my wife and I signed up for our first clinical trial that same day.
Gary Rafaloff, 73, was diagnosed with Parkinson’ s in 2012. He lives in Westlake, Florida, with his wife, Bobbi. When he’ s not helping advance Parkinson’ s research, Gary, a member of the MJFF Patient Council, enjoys spending time with his three children and four grandchildren, playing pickleball and enjoying a nightly dish of toasted coconut ice cream.
That first trial was just the beginning of a new role in my life: repeat research volunteer. I’ ve participated in more than 20 scientific projects so far. I’ ve worn a smartwatch to monitor my movements, undergone genetic testing and even received infusions of a therapy with the potential to protect brain cells( I later learned I had been in the placebo group).
It astounds me how long it takes— literally decades— for researchers and regulators to discover, test and approve new treatments for brain diseases. Trials need more people with Parkinson’ s to participate: as much as 85 percent of clinical trials are delayed or never get off the ground, simply because there aren’ t enough available volunteers.
Strangely enough, this makes me feel hopeful. PD is a diagnosis you wouldn’ t wish on anyone. But if I have to have it, I’ m grateful it’ s at a time when I can play a