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

“ Being on the front lines of research helps calm my worries about my future with Parkinson ’ s and gives me a lot of hope .”

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 .) It was then Ofer discovered that he carried a mutation in the GBA gene .
Twenty years later , Ofer 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 , Ofer 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 17 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