Twice a year, Rob Sollenberger, a retired U.S. Navy Captain, flies from the Rocky Mountains to Johns Hopkins University in Baltimore as a participant in the Parkinson’s Progression Markers Initiative (PPMI). Sponsored by The Michael J. Fox Foundation, PPMI seeks to identify biomarkers, or indicators of Parkinson’s disease (PD), that could enable earlier detection and possibly even help to identify new and better treatments.
As soon as Rob was diagnosed with Parkinson’s, he asked what he could do to help researchers. His neurologist suggested joining one of several clinical studies, and he picked PPMI. Over the five year span of PPMI, Rob will undergo regularly scheduled cerebral spinal fluid (CSF) sampling, MRI and DaTSCAN brain imaging, blood draws and cognitive testing that will ultimately help researchers elucidate what happens in the body over time. Having lost much of his sense of smell plus having had sleep issues for as many as eight years before his initial diagnosis in 2010, Rob now thinks he was experiencing early symptoms of PD back then.
People often ask Rob why he makes the trek twice a year to Baltimore to undergo PPMI tests and assessments since, truthfully, clinical study participants typically need not fly across the country for site visits. For Rob, that's easy: there's the added benefit of two extra visits a year with his daughter and grandson who live in the Baltimore area. But more importantly, Rob participates because, as he puts it, “I’m very conscious of the fact that whether related to PD or not, every pill I take and every procedure I undergo was tested in volunteers at some point," he said. "This is my way of saying 'Thank You' to those anonymous volunteers of the past."
“I may not benefit from a study I’m in,” Rob says. “But somebody will at some point. And maybe they’ll realize the vital role that volunteers played in the past, and maybe they’ll just pay it forward.”
Rob is currently being screened to participate in another study at Johns Hopkins, this one looking at PD-related cognitive impairment and dementia. And he’s also enrolled in a study called "Parkinson's Outcomes Project" looking for best practices in PD research, diagnosis, and treatment. And when these trials are completed, Rob says he’ll keep looking for others. “I don’t ever want to not be doing something to help beat this disease.”
Having just returned from attending the 3rd World Parkinson's Congress in Montréal among 3,000 other attendees, Rob says what gives him hope was becoming aware of the large number of researchers, healthcare professionals and volunteers alike who are all working toward a cure.
For example, there are over 23,000 volunteers already registered on Fox Trial Finder, an online tool that helps connect willing volunteers with the clinical trials that need them. Sign up today to see the PD clinical trials in your area that may be looking for someone like you: www.foxtrialfinder.org.
To learn more about clinical trial participation, visit michaeljfox.org/clinicaltrials.
Kate Harmon is a guest blogger for FoxFeed and profiles members of the PD community who have participated in clinical trials when she's not working as a newspaper editor. Her father has Parkinson's and her entire family is involved in the fight. Check out their family blog for more of these PD warriors, www.pcrfinc.com.