As long as she can remember, Kristin has known the experience of living with a terminal illness.

Growing up, she watched both her grandfather and father face alpha-1 antitrypsin deficiency (AATD), a genetic condition that primarily affects the lungs and/or the liver. Kristin received her own AATD diagnosis shortly after her father, who ultimately died from the condition.

“I’m only 42 years old, and I’m still looking at the exact same death sentence my dad had,” says Kristin, whose lungs and liver have both been affected by AATD. “I’m the oldest living Alpha in my family, and nothing’s changed, really, except for a diagnosis.”

Kristin’s diagnosis has inspired her to advocate not only for herself, but more broadly for the AATD community. Undeterred by the fact that the medical landscape for AATD had not dramatically changed in years, Kristin immersed herself in research, learning everything she could about the condition. Today, she serves as the Pediatric and Rare Liver Diseases Program Director at the Global Liver Institute.

“What brings me love and joy and passion would be helping other people,” she says. “I always wanted to be a teacher, and then, after teaching, I started a nonprofit for students, and then got into patient advocacy.”

Kristin’s ultimate goal is that her active work in the AATD community will one day help lead to better outcomes.

“The only hope that I’m going to have is going to be a therapy. I want to be a part of that, and to be represented, I have to show up,” she says. “I’m seeing that there’s hope.”