About Betsy Pilon
Executive Director
Hope for HIE
Betsy Pilon is the Executive Director of Hope for HIE, a global nonprofit dedicated to improving the quality of life for children and families impacted by neonatal and pediatric acquired hypoxic ischemic encephalopathy.
After her own son, Max, was born in 2012 with HIE, the lack of resources and inequity of support for HIE families motivated her to become a change agent to ensure no family faces HIE alone. As a result, Facebook recognized her in 2019 at the Facebook Community Summit for her leadership.
Pilon serves on the Newborn Brain Society Board of Directors, leading the parent taskforce.
Books & Publications
Sagaser, AE, Pilon B, Goeller A, Lemmon M, Craig A, Parent Experience of HIE and hypothermia: A call for trauma-informed care, American Journal of Perinatology, January 2022
Pilon B, Craig A, Lemmon M, Goeller A, Supporting families in their child’s journey with therapeutic hypothermia, Seminars in Fetal and Neonatal Medicine, September 2021
Lemmon M, Glass HC, Shellhaas RA, Pilon B, et al., Family-Centered Care for Children and Families Impacted by Neonatal Seizures: Advice From Parents, Pediatric Neurology, July 2021
Pilon B, Family reflections: Hope for HIE, Pediatric Research, June 2019
Videos & Podcasts
Living Your Best Life with HIE
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Episode 102 | Betsy’s Story: Hope for HIE
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PREVIOUS SPEAKING ENGAGEMENTS
- Supporting HIE Families, Newborn Brain Society Webinar, April 2020
- Special Interest: Hypoxic Ischemic Encephalopathy, Neurology Minute Podcast, April 2020
- Supporting HIE Families, Cleveland Clinic Neonatal Brain Club Grand Rounds, January 2021
- Supporting Families Facing HIE, Graven’s Conference on the Care for High Risk Newborns, March 2021
- Do You See What I See? MRI Day from the Parent Perspective, NICU Leadership Forum, April 2021
- Hope for HIE: A Parent Perspective, NICU Grad Podcast, April 2021
- Living Your Best Life with HIE, Empowering NICU Parents Podcast, April 2021
- Family Care in the NICU, Newborn Brain Society Webinar, April 2021
- Supporting HIE Families, ICON Webinar, May 2021
- Sleep Issues in Children with Neurological Conditions, Child Neurology Foundation Webinar, June 2021
- HIE, Hope & The Art of Communicating in the NICU, The Incubator Podcast, June 2021
- Do You See What I See? MRI Day from the Parent Perspective, Embrace Webinar, July 2021
- Hope, Healing & the Powerful Impact of NICU Experiences ,Qeepsake Instagram LIVE event, September 2021
- Improving Critical Transitions, Vermont-Oxford Network Annual Quality Conference, October 2021
- Parent Perspectives of HIE, Mild HIE & Parents, International Newborn Brain Conference, February 2022.
Betsy’s ability to articulate the parent experience, elevating the totality of the community voice of HIE families, worldwide, is an absolute inspiration. Her presentation was amazing, professional, and bridged the gap that sometimes exist between academia and the patient and family perspective.
– Alexa Craig, MD, Maine Medical Center
I just listened to your talk and wanted to let you know that I thought it was wonderful. You said so much about mild HIE that we aim to practice at the bedside and invest our research time in.
– Ulrike Mietzsch, Co-Director NeuroNICU
Associate Professor of Clinical Pediatrics
University of Washington Medical School
Division of Neonatology
Seattle Children’s Hospital
I celebrate the parent perspective that Betsy Pilon brings to every discussion. Any conference is fortunate to have her speaking.
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