William Moore of Phoenix, Oregon prioritizes community and chooses gratitude daily. He encourages people with ALS to stay connected and take advantage of support groups.
William has never been one to sit still.
For over three decades, he crossed the country as a long-haul truck driver. He owned a bustling barbecue joint in Southern Oregon, catering events for artists like Ice Cube, Machine Gun Kelly, and Snoop Dogg. He even customized cars that could top 200 mph, like his Chevy Camaro.
But in September 2024, everything changed. As he experienced a weakening grip, he went from being able to carry hundreds of pounds to hardly being able to grip his phone. William underwent a series of tests, including an MRI and EMG, before hearing the dreaded words: “You have ALS.” It mainly affects his upper body, leaving him unable to use his arms.
Processing a Life-Changing Diagnosis
The news hit hard. “There was a period of denial and disbelief before it really sank in,” William recalled. As an active person, he says that “The hardest part is just sitting in this house.” William is no stranger to rare diseases—he fought Stevens-Johnson syndrome in 2013—but he admits he “wasn’t scared of much before ALS.”
Despite the challenges, William continues to choose to face each day with gratitude. “I’m more appreciative than I was before ALS. My main thing is to keep my mind right every day.”
Prioritizing Gratitude
At home in Phoenix, William is surrounded by love: his wife Nikola and three rambunctious dogs: Ruby, Honey and Lonzo. Nikola is his rock and coincidentally also a professional caregiver. “I’m grateful she knows what to do,” William expresses.
Overall, William reflects on his life with pride. He moved out on his own at 16 after growing up as the only Black kid in the small, mostly White town of Oakdale, California and has since crabbed in the cold waters off Dutch Harbor, Alaska, and ventured as far as Russia and Greenland. “I feel blessed to have seen the things I’ve seen,” he says. William is still part of the tight-knit group of friends from his childhood in Oakdale who call themselves the “Valley Home Boys.”
He’s also grateful for the life he and Nikola built together—especially their restaurant, Roscoe’s BBQ, named after a beloved Yorkie. For seven years, it was a hub for live music, good food, and community.
Continuing Life with ALS
Now, his days look different. He sips drinks through straws, spoils the dogs (especially Honey, the youngest, who’s become “daddy’s girl”) and watches SWAT and Baylen Out Loud.
William also dreams of making a film to show what daily life with ALS is really like. “There needs to be more knowledge about this disease,” he says. He knows firsthand how hard it is to share the diagnosis. One of the most difficult moments was telling his son. “I didn’t want to tell him,” William admits. “He’s not mad at me—he’s mad at the disease. Telling him was the hardest thing.”
William finds community and connection through his local ALS support group and the resources provided by Laura Geilenfeldt, the Southern Oregon Care Services Coordinator. “I’ve learned a lot going to these meetings,” he says. “Laura is a miracle to me—she always gets me the answers I’m looking for.”
Through it all, William remains, at heart, a happy-go-lucky man. “If I have advice for anyone going through this—it’s stay hopeful, stay connected, get with a support group. Be grateful. Try to keep a smile on your face.”
I visited and interviewed William in February 2025 with the intention of sharing his incredible story with our audience in April 2025. Unfortunately, he passed away on April 13. William was surrounded by his family and loved ones. — Jennifer Jordan, Development and Communications Coordinator.