For Jessica O'Brien, Facebook was a place to post pictures of her dogs, until it became a starting point in her journey to understand Parkinson's disease (PD).
After Jessica's father was diagnosed with Parkinson's in 2002, she grew interested in PD and learning more about the role of genetics in the disease. With their Ashkenazi Jewish heritage, Jessica and her father are more likely to carry certain genetic mutations linked to Parkinson's.
"Knowing someone in your family was diagnosed, you can't help but feel more vulnerable," she said.
A Facebook ad mentioning PD and genetics caught Jessica's attention. The ad led to a brief survey for individuals interested in participating in the Parkinson's Progression Markers Initiative (PPMI), a clinical study sponsored by The Michael J. Fox Foundation (MJFF) to learn more about PD and identify biological measures of Parkinson's. PPMI is currently studying mutations in LRRK2 and GBA genes, both of which are more common in the Ashkenazi Jewish population.
To speed study recruitment, the Foundation turned to Facebook. In May 2015, MJFF launched a targeted Facebook recruitment program, which helped enroll a significant number of participants into PPMI at a lower cost than traditional outreach methods (e.g., in-person events). Read more about the study's Facebook recruitment success.
Jessica completed the survey linked in the Facebook ad and found she was eligible to continue with the process. Potential study participants are sent a kit, which they mail back with a sample of their saliva. PPMI tests to see if the potential volunteer carries a LRRK2 or GBA mutation, and a genetic counselor reviews the results with you when ready. Jessica was nervous but also excited to get her results.
"I knew if I had a genetic mutation associated with Parkinson's, I couldn't yet take a drug to help prevent the disease," she said. "But I could participate in research and help scientists understand more about PD and develop treatments for people like my dad."
Eight weeks later, Jessica's test for PD-linked mutations came back negative. Although Jessica isn't eligible to participate in PPMI, she's happy she went through the process. She considered genetic testing in the past but was put off by its high cost and complexity. Jessica's grateful the Facebook ad led her to PPMI, and ultimately to empowerment through greater knowledge of her own health background.
"I'm relieved but also inspired to take action," Jessica said. "I may look into participating in other studies as a control volunteer."
PPMI is currently seeking individuals of Ashkenazi Jewish descent who (1) have Parkinson's or (2) are age 45 or older and have a first-degree relative with PD. If you meet these criteria, take the screening survey to see if you're eligible for genetic testing.
Don't think you're eligible for PPMI but want to get involved with Parkinson's studies? Register with our online tool, Fox Trial Finder, to be matched with recruiting studies in your area and online.
This blog was written by Anna Boyum, PhD, a biomedical scientist by training who writes extensively on neuroscience.