Aug 22: Jordyn Bugarin had made up her mind. After a brutal experience with an experimental drug at another institution — one that left her skin peeling and her mental health in free fall — the 22-year-old was finished with clinical research.
“I felt worse on the medication than I did without it,” she said. “After that, I determined in my head that I was not doing another one.”
And yet, here she is.
Bugarin was the only patient in the United States enrolled in the OPTIMA trial, part of a global study of just 63 people being conducted at Vanderbilt Health. What brought her back wasn’t a promise of a cure. It was something harder to quantify, a sense of purpose larger than her own prognosis.
“Being part of this trial isn’t only about my own health,” she said. “A big reason I chose to participate is because I hope the research will help future generations of FOP children, so they may not have to go through the same debilitating progression of the disease.”
One in a million
Fibrodysplasia ossificans progressiva — FOP — is, by almost any measure, one of the cruelest diseases in existence. It causes muscles, tendons and ligaments to gradually turn to bone, forming sheets and bridges that progressively lock joints and restrict movement. There is no cure.
“It is super rare, 1 in a million,” Bugarin said. “I grew up having to explain my disease to doctors because no one knows what it is.”
The condition can flare unpredictably, triggered by injury, stress or nothing at all. For patients, that uncertainty is its own burden. Bugarin has learned to navigate a world largely undesigned for her needs with a self-possession that has impressed her entire care team at Vanderbilt Health.
“She is so great about knowing about her disease, what does and doesn’t work,” said Emily Shardelow, the clinical research coordinator working with Bugarin. “It is little things that we don’t think of, that we take for granted, that are part of her everyday life.”
The final day of enrollment
Kathryn Dahir, MD, director of the Metabolic Bone Disease Program and the study’s principal investigator at Vanderbilt Health, wasn’t sure she’d be able to recruit a single patient for the OPTIMA study. FOP is that rare. Then, on the final day of enrollment, Bugarin walked in.
“What struck me most was how independent she was,” Dahir said. “Despite being so young and with significant mobility issues, she was thoughtfully navigating complex medical decisions and the realities of a clinical trial, asking all the right questions. She had found us and had already done her homework.”
What Dahir observed went beyond preparation. “Many patients join trials hoping for a transformative therapy, even knowing there may be risks. She came with that hope, but also with a deep sense of altruism — a commitment to helping move the science forward for everyone living with FOP.”
The trial involves an experimental drug called garetosmab, which targets Activin A, a protein involved in the abnormal bone growth seen in FOP. Because the study is double-blinded, Bugarin and her research team won’t know until results are published whether she has been receiving a low dose, a high dose, or a placebo. She has been enrolled since 2024.
The Food and Drug Administration approved garetosmab in August 2026.
A graduation, and a thank-you
Bugarin recently traveled to Nashville to celebrate graduating from the trial. She brought her boyfriend, Jordan Thomas, who supported her through the trial, and handmade gifts for her Vanderbilt Health care team.
Thomas has watched her navigate the experience from the beginning, and his admiration is plainly earned.
“I remember the first time she explained the trial to me — she just lit up,” he said. “I could instantly tell how passionate she was about it and how much her experience here at Vanderbilt meant to her from the very beginning. Jordyn is the strongest person I’ve ever met. I see the challenges she faces every day, both in physical limitations and in a world that isn’t always designed for her needs. But she never backs down from them. Watching the way she takes on those obstacles head-on is really inspiring to me, and it’s a big part of what makes her so incredible in this role. I know she won’t stop fighting to advance FOP research until there is a cure.”
For Bugarin, the decision to reenter a clinical trial after swearing off them came down to the realization that she had the opportunity to make a lasting impact.
“When you live with something this rare, you realize that progress only happens because patients are willing to participate in research,” she said. “Participating in this trial felt like a way to turn my experience into something meaningful — something that hopefully changes the future for both people living with FOP today and the generations who will be diagnosed in the future.”