News & Stories

Ron Newbury: How You Can Contribute to the Fight Against ALS

67-year-old Ron Newbury, a native of Whitefish, Montana, moved back to Oregon in 2020. Ron has always embodied a passion for the outdoors and sports. Whether it was running marathons, biking, backpacking, playing soccer, cross-country skiing, or hunting, his life was intricately intertwined with physical activity and adventure. However, life took an unexpected turn during a 25-mile bike ride when he realized something was awry. After a series of consultations with specialists, Ron received the devastating diagnosis of ALS in July 2022. 

In Ron’s former life as an attorney, his career included a five-year stint in Washington, D.C., where he played an instrumental role in legislation such as the Telecommunications Act of 1996. He had the privilege of clerking for two chief justices and even took cases to the Supreme Court. However, it was in the classroom that Ron found his true calling. Ron has taught a wide array of subjects to students of all ages. For five years in Pasco, Washington, Ron taught high school seniors Contemporary World Problems, Civics and Sociology. Later, in Medford, he taught everything from Honors English, Biology, Algebra to Elementary Music and non-verbal Kindergarten. As a teacher, Ron always pushed his students to “find their genius.” He firmly believes that we all have our own genius, and empowering students to embrace their intelligence was very fulfilling. 

Ron and his wife Carrie (middle, right) with our Southern Oregon Care Services Coordinator Laura Geilenfeldt (left)

When he was diagnosed with ALS, Ron had to reconcile with his new circumstances. His spirituality allowed him to focus on gratitude for what he still possessed. He says, “I do the best I can with what I’ve been given. Which is a lot, and I’m grateful.” Instead of retreating into isolation, he channels his energy into tracking the incredible advancements in the quest for ALS treatments and a cure.  

Ron has always been a curious person, and his ALS diagnosis didn’t change that. He spends a lot of time reading about ALS research happening all around the world. He reaches out to leading researchers, offering himself as a willing participant in clinical trials. For Ron, every piece of analysis and every failed experiment is a step closer to unraveling the mysteries of ALS. His belief in the progress of ALS research is evident in his words, “We’re figuring it out.” 

Ron’s message is one of resilience and optimism. He reminds us that while “we can’t change the hard, we can change the alone” and implores people to celebrate small victories and spread awareness about ALS initiatives. For example, Ron advocates for ALS research funding by writing heartfelt letters to the ALS Congressional Caucus. From his time working in Congress, Ron saw that those letters really matter, and even just one letter could be the “canary in the coal mine” for an important member of congress. He firmly believes there are numerous reasons for hope: every passing year brings new insights into this debilitating disease, and institutions worldwide conduct promising research.  

Ron’s continued sense of humor is evident in his daily t-shirt selections. Consistent with his advice that “laughter is the best medicine,” Ron grins while wearing a shirt with the words “No Mistakes – Just Happy Accidents” alongside a photo of American painter Bob Ross during our interview. Outside of advocacy, he is fond of everyday pleasures, including observing the local elk in his backyard and watching detective shows with his wife, Carrie. While he has ample stories, acknowledging he “probably did more than most, looking back,” Ron prefers to focus on the present and future. 

Ron Newbury’s unwavering dedication to ALS research and advocacy is an inspiration to us all. Despite the challenges, Ron’s story reminds us to cherish the small victories, embrace our unique talents, and keep pushing forward in the pursuit of a world free from ALS. 

Contribute to ALS Research: 

Participate in a Clinical Trial – National Library of Medicine 

Participate in a Clinical Trial – NEALS 

Advocate in Legislation – I Am ALS

Additional Research News: 

ALS News – ALS News Today 

ALS Research – Muscular Dystrophy Association 

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