Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

Betsy Pilon

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 any resources or connections. 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 faced HIE alone. As a result, Facebook recognized her in 2019 for building community with Hope for HIE.

She is passionate about neurodevelopment, early intervention, parent education, and building patient and family-centered care and partnerships. She advocates for improving care, communication, and connection among providers, patients, and families, positively impacting outcomes in healthcare and education.

Her background is in marketing and communication in automotive, healthcare and education, bringing community building skills to broaden the reach and make meaningful connections for the organizations she has worked with.

She is an accomplished speaker, writer, advocate, and connector. 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 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.


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