Making a difference one clinical trial at a time

Leslie Richards and Gregg Olson share how their academic and medical backgrounds helped them make the decision to enroll in clinical trials at OHSU

Deciding to join a clinical trial was easy for Leslie Richards. A former assistant professor and researcher, Richards is enrolled in an anti-tau study at the Layton Aging and Alzheimer’s Disease Research Center. Once a month she and her husband Gregg Olson drive from their home in Corvallis to OHSU so that Richards can receive infusions that are a critical part of the clinical trial. After years of leading research studies, mentoring students and publishing papers, she was ready to advocate for research in another way.

“I like participating in research, even if it’s not going to benefit me. If you’ve been a researcher, you kind of owe that back,” says Richards.

Six years ago Richards noticed that she started having trouble orientating herself and remembering where she was, especially when traveling around town. She and Olson decided to visit a local neurophysiologist. After undergoing several exams and tests, Richards received an Alzheimer’s diagnosis. Unimpressed with the advice they received following the appointment – her local neurologist told them to them to come back in a year – Olson, a retired nurse, started researching the best hospitals in the U.S. in order to join a clinical trial. Six months later Richards was enrolled in a drug trial at University of California, San Francisco.

After a year of infusions, it was clear that the trial was not making a difference. Towards the end of the trial, faculty at UCSF introduced them to Dr. Jeffrey Kaye, MD. Kaye, the Director of the OHSU Layton Aging and Alzheimer’s Disease Center, mentioned that a new anti-tau trial was starting soon at OHSU. Having access to a neurologist and a new clinical trial closer to home sealed the deal.

“I didn’t hesitate a second to get diagnosed, to get treated, to try different avenues. I thought, ‘what have I got to lose?’” says Richards.

Richards started her career in research as an undergraduate at Stanford, assisting professors with research projects. After obtaining a doctorate from Cornell University, she joined the Human Development and Family Services department at Oregon State University as an Assistant Professor. She conducted longitudinal studies on rural and low-income communities.

“I’ve always believed in research,” says Richards. “Being in clinical trials, I feel like I’m giving back. It’s a way for me of making meaning of where I am.”

“I think it’s important that she still has agency, that she can feel like she’s making a difference,” says Olson.

Now Richards and Olson both advocate for increased research participation. Avid hikers, world travelers, and frequent skiers, they met on a Sierra Club service trip near Mt. Robson in British Columbia seventeen years ago. They recently joined a local dementia support group, Dementia Warriors, which includes people with dementia and their care partners. Out of the group’s twenty members, they’re the only ones currently involved in a trial. Tapping into their research and medical backgrounds, they frequently share information about current clinical trials.

Leslie and her dog at OHSU. Her husband Gregg often walks with their dog while waiting for her to receive her monthly infusion.

“I think patients sometimes have difficulties navigating the intricacies of clinical trials by themselves,” says Olson. “I can be pretty forceful about staying on stuff until it happens. As a nurse, I’m used to that. Most people, if the first phone call doesn’t work, they don’t know what to do.”

By getting the word out, Richards and Olson hope that more individuals join clinical trials.

“Don’t be afraid of research,” says Richards. “There’s a lot of good out there and sometimes you have to wade through stuff that doesn’t work and then something does work for you. And it can improve your life.”