Betsy Pilon is the Executive Director of Hope for HIE, the premiere global nonprofit patient advocacy group 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 9,000 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. As a result, Facebook recognized her in 2019 as one of the top community leaders on the platform for building community.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, as well as many neonatal and neurology-related workgroups, task forces, and committees elevating the lived experiences of the HIE community through patient advocacy.
