Hope for HIE recently had an exploratory meeting with researchers looking into improving care for children who experience Disorders of Consciousness (DOC) from pediatric-acquired HIE, older than six months old. The workgroup’s intent is to advance multidisciplanary collaborative research, globally, for this underserved population in our community.
Debra Curran, HIE parent, was a featured speaker at the Pediatric Neurocritical Care Research Group‘s mini-symposium on Disorders of Consciousness held on February 12, 2025. Debra, a longtime advocate, Hope for HIE leader, and mom to Keirsten, shared her personal story highlighting her daughter’s journey with pediatric-acquired HIE, the barriers and gaps in care and research she personally has experienced, and elevated the unmet needs of the pediatric-acquired HIE community, an underserved population in pediatric neurology.
With important worldwide collaborations like the Pediatric Brain Injury Consortium, and the efforts of the PNCRG to develop multidisciplanary research, it’s an exciting time for this population in our community to get the attention, support and breakthroughs for their children.
Get Involved
Hope for HIE is assembling a workgroup co-led by Debra Curran and in conjunction with the PNCRG to participate in a multidisciplanary collaborative to set a patient-family centric research agenda. This group is looking at how care, support and therapeutic advancements can improve the quality of life for children and families impacted by pediatric-acquired HIE.
In addition, all families who have experience pediatric-acquired HIE at six months old or older are invited to give their input on THEIR priorities in care, support, research, and more — from the start of their journey often beginning with PICU care, to identify what would be the most helpful for families in the beginning, through challenges and gaps along the way that persist for their child and family.
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