Mighty Member since October 2020
Hi, I'm Evren Ayik, and I am a freshman at California State University, Fresno. I am passionate about patient advocacy because I believe that individuals with rare diseases need the support of scientists, drug manufacturers, and society at large so that we can find ways to improve our quality of life and to enable us to reach our full potential as individuals. In my free time, I enjoy geocaching, watching football, cruising around on my skateboard, visiting national parks like Yosemite, and going out to eat. I also have a rare genetic disease called Acid Sphingomyelinase Deficiency (ASMD) that results in a build-up of a specific type of fat in my cells causing serious damage to my lungs, liver, and other organs. Even though I have ASMD, I have tried not to let it overshadow the other aspects of my identity or stop me from living my life to the fullest extent.