Rachele Rivera has seen the influx of “Ice Bucket Challenge” videos on her Facebook timeline in recent weeks. And in some of those videos, friends challenged her join and raise money funding research for amyotrophic lateral sclerosis, known as ALS or Lou Gehrig’s disease. The fatal neurodegenerative disease causes body paralysis.
Rivera, who co-owns Fitness is Art studio in Burbank with her husband, knew the challenge was for a good cause. But the challenge’s purpose hit close to home after talking to her studio’s kickboxing instructor, Martin Naborowski.
Last week, Rivera learned Naborowski’s friend and founder of Deyan Audio Services, Bob Deyan, died from complications from ALS on Aug. 19. He was 56 years old.
“When he told me, I got chills,” Rivera recalled. “When it hits close to home, it’s different. It got to me. I wanted to do this as a family.”
Roughly 20 members participated in the challenge Saturday at the Burbank fitness studio. Members huddled close as buckets of iced water drenched their gym outfits, complements of Rivera. Some let out shrill screams while others laughed, shaking from the piercing cold water. Naborowski gave the “hang loose” sign as his clothes soaked up the water.
“Say what you will about the challenge and it wasting water, people are talking about it (ALS),” he said. “They’re paying attention to it.”
Naborowski’s girlfriend introduced him to Deyan. Naborowski described Deyan as “the life of the party.” That changed with Deyan’s diagnosis more than a year ago. Deyan lost movement in his body. Brief conversations became tiresome until Deyan couldn’t speak anymore.
“He could only communicate with his eyes. That was the worst part about it,” Naborowski said. “He was such a fun guy.”
Deyan’s efforts to raise awareness about ALS spawned charity walks in his name. More than a hundred friends gathered at Deyan’s home and participated in the ice bucket challenge, a few days before his death, in a YouTube video.
“Even with the diagnosis, he never complained. He just wanted to raise awareness,” Naborowski said. “It’s a horrible disease that needs some attention.”