One of the most challenging parts of navigating an HIE diagnosis is that there are many possible causes—and often, there aren’t clear answers about what caused it or how it will affect a baby or child. Dr. Monica Arroyo, a pediatric neurologist at Joe DiMaggio Children’s Hospital in Florida, shares that clinicians deeply understand how painful that uncertainty can be. […]
Hope for HIE was recently awarded the NICU Parent Network Innovation Award for our Halo of Support longitudinal model for clinical trials at the NPN Leadership Summit held February 14 in Cleveland, Ohio. Matt Kegyes, Board of Directors Treasurer (pictured in the middle), attended the awards ceremony on behalf of Hope for HIE, networking with attendees, and celebrating the NICU […]
Last night, a talking point to discredit scientific spending in the United States was misused creating additional confusion surrounding research, and specifically research using mice to advance important therapeutics and understanding of diseases and conditions. HIE is no stranger to mouse models to advance research. The Vannucci model, funded by the NIH, sas been the “gold standard” for decades. That, […]
Good oral health is about so much more than just a bright smile—it’s tied to nutrition, speech, overall health, and even quality of life. Yet, many families with medically complex children face an uphill battle when it comes to dental care: from finding a dentist who understands their unique challenges to managing sensory sensitivities, oral motor delays, and the impact […]
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 […]
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
