Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 34

An Investment in Research When Ofer Nemirovsky was diagnosed with Parkinson’s disease ( PD), he already knew that he carried a genetic mutation. What he didn’t know was that the mutation could explain his PD. Ofer had genetic testing at the time he and his wife were starting a family. ( Some genetic mutations are more common in certain ethnic groups, and many people undergo prenatal testing to find out if their children could inherit a genetic disease.) I t was then Ofer discovered that he carried a mutation in the GBA gene. Twenty years later, O fer noticed a change in the way he walked — his first symptom of Parkinson’s. By then researchers had learned that some genetic mutations, such as GBA, increase a person’s risk of PD. After his PD diagnosis, O fer drew on three decades of professional investment experience to invest in learning about PD and research. “I developed a new frame of mind,” he says. “I decided to immerse myself in the subject.” He also looked for opportunities to participate in clinical research, beginning with studies that required donating blood and skin cells. That led him to participate in the first clinical trial testing a Parkinson’s drug that targets GBA mutations. “Being on the front lines of research helps calm my worries about my future with Parkinson’s and gives me a lot of hope,” he says. “When you’re living with a genetic mutation and a disease, you think a lot about your kids,” says Ofer. “Ours range in age from 1 7 to 20. Maybe I’m being naïve, but I’d like to think that by the time they get tested for GBA mutations, if the results are positive, it won’t be as big a deal — in some small part because of my decision to take part in research today.” Watch more of Ofer’s story at michaeljfox.org/ParticipantPack. 32 Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families