Participant Profile: Taking on Parkinson’s Together

Alison and Bob Wachstein, and their daughter, Liz

Like many couples, in their 39 years of marriage, Alison and Bob Wachstein of Weston, Connecticut, have done so much together. But few can share this: their participation in the Parkinson’s Progression Markers Initiative (PPMI), MJFF’s landmark biomarkers study. This study aims to identify biomarkers for PD, which would be a vital tool in the development of new therapies for patients.

For Alison, PPMI was her first experience as a clinical research participant. For Bob, who has Parkinson’s, it marked his fifth clinical study. The Wachsteins learned about PPMI through the Institute for Neurodegenerative Disorders (IND) in New Haven. There in 2009, Bob was diagnosed and quickly connected with several clinical research opportunities. He jokes, “I’ve willed my body to science.” Along the way, he has learned a lot. “These studies have helped me better understand and deal with my illness,” he says. “And the staff at IND is terrific.”

The couple enrolled in PPMI just over a year ago, Bob first as a newly diagnosed patient and Alison shortly after as a control volunteer. She says, “If I was driving with Bobby to IND to participate, why shouldn’t I do it, too? For me, there was no down side to volunteering. I want to contribute to science in any way I can. Now we can say we’ve had ‘his and hers’ LPs [lumbar punctures].”

Throughout their participation in PPMI, the Wachsteins have been very impressed ? with the study and its sponsor, The Michael J. Fox Foundation, as well as its 12 industry partners. “I’m excited the data is already being shared with scientists around the world,” Alison says. “You have a real sense you’re a part of something that’s having an immediate impact.” Their involvement has also given her a sense of hope for improved treatments on the horizon, which could make a difference in her husband’s life.

Eager to continue their contributions to science, the Wachsteins have registered for Fox Trial Finder (foxtrialfinder.org) to connect with future studies.