Extraordinary! A Book for Children with Rare Diseases - Hardcover

Ayik, Evren: - Evren'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 diseases. 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.Ayik, Kara: - Kara has been an educator for over twenty years and believes that children must cultivate true self-worth and values to help them navigate their journeys through life. Her greatest joy and proudest accomplishment has been raising her two sons, Evren and Erol. Above all, Evren and Kara seek to promote compassion and respect for children with rare diseases and special needs.Dale, Ian: - Ian Dale explores how visual art can amplify the stories of those less visible among us. He frequently illustrates for non-profit and faith-based organizations and publishers, and his work has been available to kids around the world. Ian lives in Southern California with his wife and two young children. See more of his work online at www.iandale.net.