Laurie (who prefers not to share her last name) has worked for 20 years at a major university medical center as a nurse and coordinator conducting clinical trials. So when she was diagnosed with Parkinson’s disease in 2009 at age 58, Laurie knew her course of action: participating in clinical research to be on the cutting edge of new therapies and contribute to a cure for her disease.
Soon after her diagnosis, Laurie learned of an ongoing NIH clinical trial that would cover all expenses for volunteers to travel to the Washington, DC, area to participate. “When I was the one running the trials, I saw how much my patients got out of it,” she says. “I was all for it.”
Over three days of blood and sleep tests, Laurie was impressed by the sheer amount and quality of the care she received. “A doctor spent three hours talking with me explaining every detail of the clinical trial, assessing my symptoms, and reviewing my overall medical history,” she recalls. “After that, I was hooked.”
In 2011, Laurie signed up for Fox Trial Finder, The Michael J. Fox Foundation’s online clinical trials matching tool, to find more PD trials. To date, Laurie has participated in more than 10 studies targeting cognition, symptoms, side effects and even the genetics of PD.
“It isn’t scary,” she says. And she appreciates the extra personal attention she gets from the trial investigators, physicians and coordinators. “They are truly invested in you.”
Three months after participating in her first trial, Laurie discovered the blood test had revealed a mutation in her LRRK2 gene, the most common genetic contributor to PD. Believing her sisters might also carry the mutation, making them prime candidates for PD genetics studies, Laurie urged them to participate, too.
Laurie’s sisters aren’t the only family members taking action to help speed a cure. Her daughter is running a marathon this fall to raise funds for Parkinson’s research through Team Fox. Mother and daughter share a love of exercise, as Laurie enjoys doing Jazzercise, jogs five times a week and goes on hour-long walks with her two dogs each day to help manage her PD symptoms.
Every six weeks, Laurie signs in to Fox Trial Finder to explore new trial matches, send messages to coordinators and work toward participating in her next trial. “I want to help find a cure for this disease,” she says. “The only way to get there is by seeing results in clinical trials. And the only way to see results is by getting people to participate. It’s humbling to know you are contributing to improved medications, treatments and ultimately a world without Parkinson’s.”