Meet Evan
"We’re Fighting for Them:" How Evan is Advancing Research for the Becker Community
Evan’s Journey with Becker Muscular Dystrophy
Evan is a 26-year-old electrical engineer from Minnesota who naturally brings an easygoing and steady energy to everything he does. He’s a true jack-of-all-trades with a passion for live music, photography, and exploring local breweries. He is also a young man living with Becker Muscular Dystrophy (BMD), and a dedicated participant in clinical research.
Diagnosed at age four after a long series of medical tests, Evan spent his early childhood largely symptom-free. For years, BMD was simply a background detail that was rarely on his radar.
“I didn't really show symptoms growing up,” Evan recalls with a grin. “All I knew was that I was a short kid who couldn't run very fast. It wasn’t until I was 12 that I walked into the kitchen and asked my mom, ‘So, what’s that disease I have again?’”
His parents deliberately kept worry out of his childhood, even when hospital visits and bi-annual ceck-ups felt overwhelming.
“I remember going to those neuromuscular clinics when I was younger... and feeling kind of bad that all these kids were in harsher conditions,” Evan shares. “It was a little bit tough to see, but I think it was especially hard for my parents.”
Taking Action & Joining Marching Band
By the time Evan started college at the University of Wisconsin–Madison, the physical reality of BMD began to catch up with him. Tasks like climbing stairs became increasingly difficult.
At the exact same time, Evan decided to join the university’s marching band drumline, just like his older brother had done before him. Facing a grueling schedule of practice and performances while noticing his symptoms starting to progress faster than he hoped, Evan knew it was time to take charge of his health.
After research and consistently keeping up with the Muscular Dystrophy Association (MDA), he discovered a trial he could match into. However, Evan famously turned down the first slot because it conflicted with two major college marching band shows he refused to miss. He remained persistent and passionate- just as every other commitment in his life, emailing and researching until he secured a spot at Rare Disease Research (RDR).
A Collaborative Partnership at RDR
For the past five and a half years, Evan has made regular visits to RDR to participate in the trial. While initiating an experimental drug can feel daunting, the environment at RDR completely transformed his perspective on medical research.
“I was expecting probably just a hospital setting... super strict,” Evan explains. “Before coming in, it was a little bit stressful because you’re like, ‘Oh no, something could happen.’ But then very quickly it was super relaxing... It doesn't really feel like a doctor-to-patient relationship here. It seems more like we're all doing a study together.”
Over the years, the clinical trial has felt less like a medical routine and more like growing up alongside a community for Evan. Staff members remember where their last conversations had been left off, and Evan has even watched team members like Emily, our Sub-Investigator, go on maternity leave and welcome her children.
“As much as we are being studied, it doesn't feel like I'm a lab subject or a guinea pig,” Evan says. “People here are actually genuinely nice... It feels like we’re all working towards a common goal together.”
Hope, Community, and Fighting for the Next Generation
Since joining the trial over five years ago, Evan’s physical progression has leveled out significantly, a outcome that gives him peace of mind. But for Evan, the true power of participating in research goes far beyond physical data points.
“Something that’s a little bit overlooked in a lot of these diseases is the mental aspect,” Evan shares. “Being on a trial definitely has been one of those things where it’s like, ‘Yes, I'm doing something. I'm actually taking action.’”
Through his advocacy, Evan also attended the first-ever Becker Education and Engagement Day, where, at age 22, he met another person with Becker Muscular Dystrophy for the very first time in his life. That weekend completely redefined his mission.
“That was one of the best weekends I’ve ever had,” Evan reflects. “You can feel very alone in it because no one else really has it. But when you actually have that person who does have it, especially your age, that’s a huge thing.”
When seeing newly diagnosed young kids and their parents at advocacy conferences today, Evan views every blood draw, travel day, and trial assessment at RDR as an investment in their future.
“At the bare minimum, it’s going to help research progress for other people,” Evan says. “It’s worth way more to know that it could be helping future kids... In the last six years, we’ve gone from essentially nothing to five or six companies designing drugs specifically for Becker. When I see parents there talking about their kids who were just diagnosed, the whole time I’m thinking, ‘Yeah—we’re fighting for them. That’s why we’re doing this whole thing.’”