Hope Inspires Action: April is HIE Awareness Month

Neonatal and Pediatric-Acquired Hypoxic Ischemic Encephalopathy, a type of brain injury and condition, impacts 2-3 per 1,000 live births in the United States.

During the month of April, Hope for HIE will be championing the HIE Awareness Month campaign online, and regionally, to promote awareness, education and, most importantly, support. Two to three of every 1,000 live births are impacted by Hypoxic Ischemic Encephalopathy, or HIE, a type of brain injury. More sustain an HIE injury after birth, due to multiple reasons, including near SIDS events and cardiac arrest. HIE often leads to diagnoses of cerebral palsy, epilepsy, learning disabilities, hearing and vision impairments, ADHD, and other developmental challenges.

While HIE itself is not necessarily considered rare, HIE is the leading cause of neonatal seizures, and several rare types of epilepsy such as Infantile Spasms, Lennox-Gastaut Syndrome, and Electrical Status Epilepticus in Sleep (ESES). 

That means tens of thousands of families worldwide are impacted by HIE each year. Since launching global HIE Awareness Month in 2016, more families are finding the evidence-based, psycho-social support they need to tackle the challenges their children may face as a result of HIE by finding a comprehensive network of peer-to-peer support through Hope for HIE, and greater attention to research and therapeutic development is taking place, across the spectrum of outcomes.

HIE Awareness Month, annually in April, is a global advocacy campaign to showcase the lived experience of impacted children and families, promote equity in support and messaging in the HIE experience in the NICU and in childhood, and the call for better care, communication and connection, as well as increased research and therapeutic options to decrease the incidence and improve quality of life.

The theme this year is HOPE INSPIRES as a call to action. Weekly themes include Advocacy, Creativity, Support and Community. Community stories and pictures will be shared widely on social media and the Hope for HIE website. The greater community can join in by using the hashtags #HOPEINSPIRES and #HIEawarenessMonth, as well as tagging @HopeforHIE.

A free, comprehensive toolkit is now available with social media graphics, a full calendar of events, talking points and infographics at HIEawarenessmonth.com. Hope for HIE's staff, Board of Directors, Medical Advisory Board and families are available for interviews in media coverage.

Please help spread the word about global HIE Awareness Month to maximize awareness efforts and connect families to critical peer-to-peer support.

About Hope for HIE

Hope for HIE is the premier global patient advocacy organization for neonatal and pediatric hypoxic ischemic encephalopathy (HIE) dedicated to improving the quality of life for children and families affected by HIE through awareness, education and support. Hope for HIE is a registered 501c3 nonprofit organization, based in the United States, connecting a global community of over 7,000 families, researchers and clinicians.

Source: Hope for HIE