By Patti Murphy
Doug Schneebeck is feeling the power of summer. That emotion, no doubt, will peak at the 2015 Oso High Mountain Bike Race June 7 in the picturesque Rocky Mountain village of Angel Fire, NM. The first U.S. Paralympic Cycling Team member with ALS, Doug, 54, hosts the event for a bigger reason: to raise ALS awareness. More concretely, the race is a fundraiser ALS for research efforts, and services for the estimated 30,000 people in the United States living with the fatal disease, and their families.
On average, 15 people are newly diagnosed with ALS (short for amyotrophic lateral sclerosis) each day.
With his own diagnosis in July 2010, Doug joined them. Within the next year, he found what he hopes will become a lasting way to lighten the grimness of a situation he shares with so many others. After retiring from a career as a civil litigation attorney, Doug started Oso High Endurance Sports, an organization that has raised more than $300,000 for the ALS community through cycling and running events. From the get-go, he had much more than dollars and cents in mind.
“I had decided to create something enduring that would contribute to the public understanding of ALS, raise some money, and be a present for our family,” Doug told us in a message composed through the Tobii Dynavox I-15 device he uses for communication. “I began brainstorming on a Saturday morning, and had a working website by Sunday evening.” The illness has taken Doug’s ability to do many things that most of us take for granted, like speaking, but his desire to help others is unstoppable.
Through the Oso High website, athletes of all abilities can publish information about themselves, their sport (not limited to cycling or running) and reach out to others to sponsor their participation in an event. Individuals can make donations to the ALS Association through the site. Doug’s wry wit is evident in The ALS Blogs section where he chronicles his adventures and challenges. When we asked him about the origin of the Oso High name, he wrote in his fun-loving way, “‘Oso High’ is a multilingual play on words. ‘Oso’ is Spanish for place, oh, so high, at about 10,000 feet, and the mascot for the race is a bear.”
Since he cannot ride his recumbent tandem trike off-road, Doug plans to ride 22 miles on the road with his wife Jean Bannon at the Angel Fire event. With an estimated 125 participants, they expect to raise about $37,000, he said.
Oso High is Doug’s passion and the I-15 helps him not just with typing, maintaining the website and other technical aspects of carrying the project forward, but keeping in touch with everyone involved. It takes a bit longer to tell a joke using the device instead of his natural voice, but he still keeps everyone laughing. Doug is grateful to friends and acquaintances in the cycling community for their support. His biggest cheerleaders are his wife and their children—Jessa, 35; James, 20 and Abby, 18.
Doug and Jean talked frankly about life with ALS in an “Eye on New Mexico” segment last fall. Their appearance on the local news show coincided with their participation in the ALS Ice Bucket Challenge. Doug communicated using a Tobii Dynavox EyeMax then and was about to make the change to the newer I-15. The transition, he said, was seamless. He is especially pleased with the I-15’s processing speed, mouse simulation and reliability.
“The ability to be heard in social situations is outstanding,” Doug said. Before the eye-gaze systems, he used voice-recognition software and typed on a keyboard when he could still use his hands. ”The ability to communicate is so important. I can’t imagine the isolation without the device.”