Born in Illinois, Russ spent decades working in electronics manufacturing. As a manufacturing engineer and software developer, his job was to analyze problems, devise solutions, and improve systems until they ran smoothly.
Engineering-driven improvement was both his identity and his source of pride. But in his 40s, he faced a problem that technology couldn't solve. He began to feel something was wrong with his lungs, and breathing became difficult.
During softball games with friends, just running to first base left him out of breath and sitting on the ground. Problems arose even while playing darts. "If I dropped a dart and had to bend over to pick it up, just that motion would make me struggle for air," Russ explains.
He was then told by his doctor that he had Alpha-1 Antitrypsin Deficiency (AATD), a rare genetic condition in which the liver does not produce enough of the protein that protects the air sacs in the lungs, leading to severe emphysema.
Lung function tests showed that the amount of air he could exhale in the first second (FEV1) had fallen to about 28% of the expected level, highlighting the severity of his condition. Russ was devastated when he learned at a medical conference that ‘at this level, the median survival is about five years.’




