Trevor Storm is no stranger to the fragility of life. As a hospice nurse from Shelbyville, Illinois, a small town of fewer than 5,000 people, he has spent his career helping families navigate their most vulnerable moments. But it wasn’t until he began caring for Gregory Dirks, who is living with ALS, that Trevor found himself forever changed.
Trevor didn’t set out to be a nurse. In high school, he took a health occupations class thinking it would be an easy elective. Instead, it sparked a calling. He earned his nursing assistant certificate and never looked back.
When his grandmother was diagnosed with lung cancer and entered hospice care, Trevor witnessed the transformative role of a hospice nurse firsthand. “The way I saw her care for my grandma,” he recalls, “I thought, ‘This lady loves her just like we do.’”
That moment solidified his path. Trevor was drawn to the deeply human core of hospice care. “People don’t like to talk about hospice,” he says. “But it’s not just about the end. It’s about helping people and families make the most of every moment left.”
His perspective on end-of-life care was transformed again when he met Greg and his wife, Janet. Trevor admits he knew little about ALS before working with Greg. “Even in nursing school, we only briefly touched on it,” he says. “But ALS presents so differently in each person. No two cases are the same.”
Greg’s case, Trevor says, has been particularly inspiring. Diagnosed nearly seven years ago, Greg has defied the odds. While the average life expectancy for someone with ALS is two to five years, Greg continues to live with humor and resilience. “He’s always laughing, always joking,” says Trevor. “He’s never let this disease define him.”
Watching Greg fight, day after day, lit a fire in Trevor. “He doesn’t get to choose his battle,” Trevor explains. “But I do. And I wanted to do something hard—something that would challenge me and honor him.”
That’s how Trevor found himself training for the Bank of America Chicago Marathon with Team Race for ALS.
It started as a playful challenge. “I was trash-talking my son, who runs cross country,” Trevor laughs. “We raced, and he crushed me.” That loss led Trevor to start running more seriously. “I downloaded a couch-to-10K app by accident,” he says. “But I stuck with it, and I found I really liked the solitude of running. It became a kind of meditation.”
After a particularly moving visit with Greg, Trevor considered making his new hobby even more meaningful. “I thought, ‘I whine about running. But Greg wakes up every day and faces ALS with grace.’ That was the moment I decided to run for him.”
Trevor joined Team Race for ALS, the Les Turner ALS Foundation’s official marathon team, and began raising funds for ALS care and research. His training hasn’t been easy. “I’m running 15- to 18-mile stretches by myself,” he says. “It’s early mornings, late nights. Sometimes I run at 10 p.m. after my kids are in bed.”
Still, Trevor finds strength in his purpose. “When my legs hurt or I feel like quitting, I think about Greg,” he says. “He doesn’t have the choice to stop fighting. So I don’t either.”
His experience has shifted how he views both hospice and life. “We often think of hospice as a last resort,” he says. “But getting in earlier—when the diagnosis is fresh, when treatment stops—that’s when we can really help.” Trevor urges people to understand that hospice isn’t about dying. It’s about living fully, even as life nears its end.
And for Trevor, that philosophy now extends far beyond his day job. “This experience has taught me not to take anything for granted,” he says. “Being able to run—even when it’s hard—is a gift. I get to do this. A lot of people can’t.”
His message to others is simple: get involved. “People don’t know a lot about ALS,” he says. “But the more we learn, the more we can help. Whether it’s raising money, volunteering, or just educating yourself—every bit makes a difference.”
As the Chicago Marathon draws near, Trevor continues to train—mile after mile, often alone, sometimes in the cold, often exhausted. But he runs with purpose, powered by the memory of every visit to Greg’s home, every laugh they’ve shared, and every moment that reminds him why this race matters.
“This isn’t just for Greg,” he says. “It’s for every family living with ALS. And I’m proud to be running for them.”
Support Trevor and Team Race for ALS at lesturnerals.org/race.
