Utahna Bourne's Story

Meet Utahna, a resident of Douglas, Wyoming, a town of just 7,000 where everyone knows her name, but few truly understand her journey. A lifelong educator of deaf and hearing‑impaired students—driven by her daughter’s own challenges—Utahna devoted her career to drawing out children’s smiles. ALS has stolen much of her independence and, with it, the daily classroom laughter she cherished. Now, living far from major care centers, she leans heavily on ALS United’s support and the steadfast love of her family to navigate each day. Though she sometimes feels like a spectacle in her tight‑knit community, Utahna finds solace in the sparkle of her granddaughter’s visits, the camaraderie of rural support groups, and late‑night phone calls with a friend in California who truly “gets it.” She also restores old chests to brand‑new condition, stripping away years of wear to reveal their hidden beauty. I call that act a metaphor for how she hopes to be seen beyond her diagnosis. Utahna’s own words are clear and unwavering: she wants others with ALS not to give up living and to find someone to talk to when the different stages present themselves. She wants everyone to understand the prominence of this “rare” disease and the impact it has on families and communities.