Betsy Pilon is the Executive Director of Hope for HIE, the premiere global nonprofit patient advocacy and support organization 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 10,000 families, researchers, clinicians and the greater community, worldwide, through a comprehensive support and advocacy network. Hope for HIE also regularly collaborates on research implementing the Halo of Support framework to improve longitudinal patient-family engagement and support.

After her own son, Max, was born in 2012 with HIE, she and her family experienced a significant disparity in support and education in the neonatal landscape and 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. She has been recognized by organizations like Meta for her work in building community, advancing advocacy, support and research for this underserved population.

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 and research.