Betsy Pilon is the Executive Director of Hope for HIE, the premiere global nonprofit dedicated to improving the quality of life for children and families impacted by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy through awareness, education and support. Hope for HIE connects over 7,000 families, researchers, clinicians and the greater community, worldwide, through a comprehensive support network.
After her own son, Max, was born in 2012 with HIE, it was difficult to find educational resources or connections with other families. Eventually, she found a small group of families gathering on social media. Working with the existing group, she led the efforts to start the grassroots nonprofit foundation in 2013 to ensure no family faces HIE alone. As a result, Facebook recognized her in 2019 as one of the top community leaders on the platform for her leadership building community with Hope for HIE, and the HIE community profile continues to be elevated and heard in advocacy and research.
She is an accomplished speaker, writer, advocate, and connector with a background in marketing and corporate communication in healthcare, education and automotive. She serves on the Board of Directors for the Newborn Brain Society, co-chairing the Communication & Networking Committee. She has also co-authored academic publications focused on supporting families impacted by HIE and neonatal seizures. She is the organizational representative from Hope for HIE for many patient-centered research and advocacy projects including the PCORI-funded Neonatal Seizure Registry, the Child Neurology Foundation Telehealth Advisory Committee, the Child Neurology Foundation Better Together for Kids workgroup, and the American Academy of Neurology Child Neurology Measures Workgroup. In her local community, she serves as the parent co-chair of the Bloomfield Hills School District Special Education Parent Advisory Council.