Kara Ayik is mother to Evren who has Acid Sphingomyelinase Deficiency (ASMD), and Evren’s younger brother Erol. In addition to being Evren’s co-author of the children’s book, Extraordinary! A Book for Children with Rare Diseases, Kara has shared her reflections on raising a child with a rare and progressive genetic disease with family support organizations and other professional and civic groups across the country including the FDA and the Global Liver Institute. Kara holds degrees and credentials in language studies and teaching. Her varied interests include health literacy, environmental conservation, cultural and linguistic diversity, and native flowers and hummingbirds.
Conference Keynote Speaker