Kevin's Story: Fighting for the Future of Kidney Disease
As Kevin Schnurr knows all too well, knowledge is power.
He was suddenly diagnosed with kidney failure at age 26 and received a donated kidney from his best friend a couple of years later. The root cause: Alport syndrome, a rare genetic disease that causes kidney disease as well as hearing loss, eye problems and blood in the urine that can only be seen under a microscope. Kevin had experienced health issues for most of his life, never knowing they stemmed from kidney disease.
A member of the UCKD Project since 2020, Kevin fights for genetic testing that would allow others with kidney disease to land a proper diagnosis, join clinical trials, find potential living donor matches and more. He joined the UCKD Summit in September 2024 as a speaker and moderator.
"[Patient advocates and scientific and medical experts] were on equal footing as far as sharing our input on how we can improve patient outcomes," said Kevin, who works professionally in the kidney disease advocacy space. "That level of collaboration was inspiring and really, really special.
I commend [AKF] for putting the mission first always and bringing together the right people."