Evren AyikEvren's advocacy work for people with ASMD began in 2017 when he was invited to speak at the FDA in Maryland. He went on to speak to audiences in several other states about life with ASMD to raise awareness of and support for treatments for rare diseses. In 2019, he earned the rank of Eagle Scout and was a California Boy's State delegate in Sacramento. Evren is also the winner of the prestigious TORCH Award for rare disease advocacy from Sanofi Genzyme. He plans to become a special education teacher and now attends California State University, Fresno. Read More Read Less