When SCI BC peer Kyle Gieni showed up to the Community Research Night—co‑hosted by ICORD and SCI BC—in November 2025, he expected free food and a chance to chat with researchers. What he didn’t expect was a cake celebrating his participation in more than 100 research studies.
“People kept asking me, ‘Hey, are you going to go to the research night?’ And I was like, yeah, there’s food, so I’ll see you there,” Gieni laughs. “I was just eating off my plate when they invited me up for a cake because it was my hundredth study. It’s very touching to have the community recognize the participants. I’m not looking for recognition, but it’s nice to be recognized all the same.”
His journey in research began years ago with a recruitment poster at the G.F. Strong Rehab Centre’s gym. When the Physical Activity Research Centre (PARC) opened in the Blusson Spinal Cord Centre in 2013, he became participant #1 in its long-running study, and he’s been a familiar face ever since. Eventually, he started keeping track of every study he joined in a notebook.
“I’m such good friends with the researchers now,” says Gieni. Over the years he’s built relationships with student trainees and lab members, staying in touch after they’ve finished their schooling.
One of the most meaningful studies he joined involved bladder Botox as a treatment for neurogenic bladder. More than a decade later, he’s still receiving Botox every six to seven months because of how effective it’s been. Being able to take part in cutting-edge research in his own city is something he doesn’t take for granted. He knows not everyone with SCI has access to opportunities like these, adding, “I love it. We’re working on small steps and making lives easier for people.”
Gieni’s most unforgettable research experience came from an exoskeleton walking study. “After being told by doctors I would never walk again, it was really special to be up and walking! I did a lot of training to be ready for this project, stretching my legs and using the standing frame every day so I could be physically able to use the exoskeleton,” he shared in ICORD’s Fall 2025 newsletter.
Today, Gieni is still excited about every new study he joins, and he’s thinking about taking his involvement even further. He’s talked with researchers about being included as an author on a research paper. “It would be nice to hop on a research paper, give feedback, and be involved in the whole preparing of it. I think seeing research through a person with lived experience is very valuable.” He has already begun speaking to students in classrooms about his experiences with SCI research.
Lived experience is expertise. Whether it’s shaping programs, informing policy, or contributing to research, the insights and knowledge of people with SCI deepen and strengthen the work happening across the SCI community.
Gieni’s advice for anyone considering getting involved? “Don’t be afraid. It’s very easy and everyone’s really nice. Whether you’ve never done a study or only a couple, you can always give back to the community through research. If there’s any problems, you can always opt out.”
Curious about getting involved yourself? Visit icord.org/participate to explore currently recruiting studies. You can also email studies@icord.org to connect with the ICORD’s study liaisons, who will match your interests and eligibility with ongoing research. And, of course, SCI BC highlights research studies in our monthly e-newsletter.
If you prefer connecting in person, there are more opportunities coming up. Peers in the Okanagan can attend the next Community Research Night—co‑hosted by ICORD, SCI BC, Accessible Okanagan, and Praxis—on Monday, May 11 from 6-8 PM at UBC Okanagan (yes, there will be free food!). If you’re in the Lower Mainland, simply stop by the PARC gym to work out, say hello, and meet the research teams based there.
This article was originally published in the Spring 2026 issue of The Spin. Read more stories from this issue, including:
- Para pickleball
- Neurostimulation
- Cannabis
- Adaptive clothing
And more!
