Awareness. Education. Research.
The Macie Jo Foundation is committed to transforming how the world understands, prevents, and treats hypoxic ischemic encephalopathy (HIE). Driven by the voices of patient-families, clinicians, and researchers, our mission is to build a future where no child’s life is lost to this devastating brain injury. Through bold awareness, education, and research initiatives, we work to ensure that no family has to endure the heartbreak caused by HIE.
9,000
infants are diagnosed with HIE in the U.S. each year.
25-50%
mortality rate in most severe cases of HIE.
3 million+
families worldwide have been impacted by HIE to date.
Join the HIE Legacy Society
The HIE Legacy Society honors the compassionate individuals who have chosen to leave a lasting impact on the lives of children and families affected by hypoxic ischemic encephalopathy (HIE). Through planned gifts, members of this special society are helping us build a future where no child’s life is lost to preventable brain injury.
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By including the Macie Jo Foundation in your estate plans, you become a part of a legacy rooted in hope, healing, and the pursuit of safer beginnings for all children.
Latest stories from MJF
Turning hope into action through storytelling
Discover the powerful stories of families affected by hypoxic ischemic encephalopathy (HIE), a devastating and life-threatening brain injury. These stories highlight the urgent need for a world free from HIE. We are deeply grateful for the bravery of the families who have experienced HIE and courageously shared their journeys with us. By opening their hearts to convey their grief, love, and hope, they help us confront the harsh reality of this condition. Their experiences inspire a shared vision for a world without HIE.
What is HIE?
HIE stands for hypoxic ischemic encephalopathy.
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Hypoxic ischemic encephalopathy (HIE) is a devastating brain injury that primarily affects premature infants. HIE can also affect full term babies, especially when there are complications during labor and delivery—such as reduced oxygen or blood flow to the baby’s brain—caused by events like placental abruption, uterine rupture, cord prolapse, or prolonged labor.
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HIE can result in serious, lifelong consequences, including medical conditions such as cerebral palsy, epilepsy, developmental delays, feeding difficulties, vision and hearing impairments, and other neurodevelopmental disorders. The severity of outcomes depends on the extent of the brain injury and how quickly treatment is provided.
Committed to connecting the worldwide community of HIE families, clinicians, and scientists
We are here to provide resources to families and clinicians alike, to advance HIE research and understanding, and to ensure the patient-family voice is elevated in the NICU and beyond. We are here to build a world without HIE.
For Families
Understanding more about HIE will empower you to advocate for your baby and make well-informed decisions.
For Clinicians
Accelerating research and amplifying the patient-family voice.
For Scientists
Committed to advancing HIE research, education, and advocacy.