News & Stories
Walking for an ALS Cure: John Nicolaisen
One small step can make a big impact.
John Nicolaisen, of Redmond, Oregon faces ALS with courage, humor, and the support of his large community, including his wife Joene. Through his involvement with his community and ALS Northwest, he does what he can to uplift others. Walk ALS is more than just a fundraiser to John; it is an opportunity for others to show support and a reminder that he is not alone in his fight against ALS. Register now for a Walk ALS event near you to support John and others living with ALS.
John and Joene Nicolaisen are the kind of people that make you feel comfortable and cared for the minute you meet them. Their love for each other and life is evident in everything they do and has carried them through life’s best and worst moments.
Three years ago, John and Joene packed up their house in Salt Lake City, Utah and moved to Redmond, Oregon. John met Joene when he moved to Salt Lake, where rugby not only helped him find a lifelong community, but also a lifelong partner. After several decades in Salt Lake City, leaving was no easy decision, but they both knew they were ready for a change. They were excited to start the next chapter of their life closer to family.
When they arrived in Redmond, they wasted no time settling in and building a new community. They quickly fell in love with Redmond’s charm – its cozy coffee shops, convenient transportation, and, most of all, the joy of being close to family and their beautiful granddaughter.
John and Joene were finally settling into their new life when they received the devastating news in November 2024: John had ALS. Although they knew of the disease, the news did not come easily. What started out as shortness of breath after shoulder surgery, turned into months of doctor visits, tests, and even a misdiagnosis. When he officially received his ALS diagnosis, he was surprised as his symptoms were not “typical.”
Despite the shock, John was ready to face the road ahead with his loving partner by his side. John’s face instantly lights up when he talks about Joene, and he knew that this diagnosis was not only life-changing for him but for her as well because, as he put it lovingly, “What happens to me happens to Joene. We are a unit.” Joene does what she can for John, with significant experience advocating for support – she is Deaf and is a retired advocate and case manager for people in the Deaf and hard of hearing community.
Oftentimes, you’ll see John wearing his custom clothing that proclaims “ALS Sucks.” But when you ask him how he’s doing, he’ll always tell you with a smile on his face that although having ALS is a part of him, it is not all of him. This is how his blog, John’s ALS Adventures, originated. “I have always loved writing. I wanted a place where I could write about my experiences and keep family up to date, but over time I have also enjoyed writing about other adventures I’ve had.”
On top of his blog, John has fully leaned into the support provided by ALS Northwest. “ALS Northwest does good work,” he said. “They help people all day.” John has quickly also become a go-to supporter for others in the Central Oregon community. Whether it’s meeting someone for coffee, offering someone a ride to an ALS Northwest support group, or simply lending a listening ear, John shows up for others again and again. John treats his community not just as friends, but as family. Support groups are one of many no-cost services made possible through fundraising events like Walk ALS.
Last year, John attended his local Walk ALS in Central Oregon for the first time. As he cut the ribbon to begin the event, he wasn’t just starting a walk – he was starting a celebration of him and his community. John was overwhelmed by the number of people who participated in the walk and wanted to show their support. The walk helped him see just how big of a community he has around him; not just in Central Oregon, but statewide.
John and Joene know the road ahead is uncertain, but they have lots of plans to make the most of this next year. They are hoping to see family in Canada, travel around the country, and share so many moments of love and laughter along the way.
ALS is just a piece of John and Joene’s story, and John will continue to spread love and support to others – like at the Walk ALS.
And be sure to join John at the Walk – because even the smallest act can remind a person they’re not fighting alone.