Board Member, Liaison to Medical Advisory Council
Caregiver to a Liver Transplant Recipient
Stephanie completed her bachelor's and master's degree in Early Childhood Special Education, and then her world was turned upside down with the arrival of her son, Bryce. Shortly after birth he was diagnosed with Alagille Syndrome and Stephanie and her husband were thrown into the unknown of having a child with a rare disease. At 10 months old her husband gave Bryce a second chance at life by becoming Bryce's living liver donor. Bryce's diagnosis and transplant journey has led Stephanie to find out her own diagnosis of Alagille Syndrome. She also pursued a career within the rare disease/transplant community and is now working as the Program Administrator for the Alagille Syndrome Alliance spreading awareness, educating, and advocating for the Alagille Syndrome and transplant community. Stephanie joined the Transplant Families Board in July 2023.