Get to Know Hope for Hypoxic Ischemic Encephalopathy (HIE)
Updated: Jan 20
About Hypoxic Ischemic Encephalopathy
Neonatal and childhood acquired Hypoxic Ischemic Encephalopathy is a leading cause of Infantile Spasms and Lennox-Gastaut Syndrome, two of the rare epilepsies, in addition to other types of epilepsy. HIE occurs in roughly 2-3 per 1,000 live births, and has a range of outcomes and subsequent diagnoses.
Hypoxic Ischemic Encephalopathy Clinical Features
HIE can lead to cerebral palsy, epilepsy, behavioral challenges, learning and attention disorders, differences, and disabilities and a variety of other issues relating to development. For many children who develop infantile spasms or LGS, life is additionally difficult with potentially devastating developmental consequences. Awareness and education in the HIE community has improved identification and coordination for quick and aggressive treatment. More training is needed for pediatricians and pediatric neurologists who may not be as familiar with the risk factors of HIE tied to Infantile Spasms and other rare epilepsies.
Get to Know Hope for HIE
Hope for HIE is a global organization dedicated to awareness, education and support for children and families affected by neonatal and pediatric-acquired hypoxic ischemic encephalopathy. Founded in 2010 as a support group online, and 2014 as a 501c3 non-profit organization, Hope for HIE aims to reduce the incidence of HIE and improve the quality of life for children and families facing this diagnosis..
I am especially proud of ...
Hope for HIE serves over 6,000 families worldwide, the largest collective of its kind on the planet, and partners with researchers and clinicians. With an unprecedented period of growth beginning in 2019, Hope for HIE has launched a multidisciplinary Medical Advisory Board with top researchers and clinicians, was recognized by Facebook at the invite-only 2019 Facebook Communities Summit for building an engaged community, is a part of several research collaborations, and launched comprehensive support packages for newly diagnosed families at point of diagnosis in the NICU, reaching over 600 new families in the first year of launch.
Excited to REN because...
Through the partnership with REN, Hope for HIE is able to better connect families to other organizations that may benefit their children, better collaborate on research, and ultimately advocate for new treatments, therapies and a better quality of life.
My journey and motivation...
I found Hope for HIE in 2012 after my son Max was born. With having asked to be connected to other families, and having been told there were no resources, I went on a personal mission to ensure families like me would not feel in such a life-altering experience. After finding Hope for HIE after scouring the internet, I found a place of endless support with the 200 families who were members at the time. Growing Hope for HIE and partnering with collaborations like REN brings me such peace knowing that positive change is happening.
By Betsy Pilon - President