Evren Ayik: College freshman who became a bold spokesperson and lobbyist for the rare disease impacting his life — acid sphingomyelinase deficiency (ASMD).
After years of feeling different because of his rare disease, at the age of 16 Evren became a tenacious spokesperson sharing his story with others. He spoke to the U.S. Food and Drug Administration about how ASMD impacts his life and why treatment is so important. He speaks at conferences attended by people living with rare diseases and raises awareness for ASMD at national events. But Evren’s recent ambition is even bigger than the FDA, he has his sights on becoming a published author. He and his mom, Kara, are collaborating on a children’s book about living with a rare disease.
Each year, an award is given to those who have served as a beacon of change for an entire community – the TORCH Award (Transforming Outreach in Rare disease and Creating Hope). Through Sanofi Genzyme, the TORCH Awards, established in 2017, recognizes inspiring advocacy efforts of patients, caregivers, families, and supporters in the rare disease community. In recognition of their efforts, Sanofi Genzyme donates $5,000 to each of the above award recipient’s non-profit of choice to further support their missions. The 2020 TORCH Award winners were recently announced.
Visit https://youtu.be/yce97Vj5I5U for more information about The TORCH Awards.