THE RARE JOURNEY SERIES
October 23, 2024, marked the fifth annual AADC Deficiency Awareness Day to raise awareness about aromatic L-amino acid decarboxylase (AADC) deficiency. This rare disease affects the production of neurotransmitters that enable nervous system cells to communicate with each other—individuals afflicted by this struggle to coordinate movements, particularly the head, face, and neck.
In light of AADC Deficiency Awareness Day, we proudly highlight “Prof. Hong Explores AADC Deficiency,” the first publication from “The Rare Journey Series,” a children’s book series that features true stories of rare diseases. “Prof. Hong Explores AADC Deficiency” is co-written by Richard Poulin III, an educator and advocate for caregivers in the rare disease, undiagnosed disease, and special needs communities, and Judy Wei, a learning support teacher at RIS elementary school and an advanced certified autism specialist, with illustrations by Anna Lomakina.
Here, Prof. Hong embarks on a scientific quest to learn more about AADC deficiency and how it affects the life of a young girl, Rylae-Ann, and her family. AADC deficiency begins as an unexpected mystery that baffles doctors, leaving Rylae-Ann’s parents to solve it. The family is left with even more questions, but young Rylae-Ann and her parents never give up through a journey filled with ups and downs.
“Prof. Hong Explores AADC Deficiency” inspires readers to go beyond what they think is possible. In a world that needs more researchers, educators, and scientists, Prof. Hong reminds us that difficult roads can still lead us to beautiful destinations. Richard and Judy are also the founders of TeachRare, an online platform that offers educational support for families of children with rare or undiagnosed diseases and special needs.
“Prof. Hong Explores AADC Deficiency” is available on Amazon Kindle in paperback and eBook editions at https://lnkd.in/gSweV5gs. Every purchase is a donation directly to supporting families in the rare disease community.
To learn more about TeachRare and how to help support its projects, please visit: https://teachrare.org
To learn more about AADC deficiency and Richard and Judy’s journey, watch the feature from Associated Press at the link below:
