Enrolled in a clinical trial or research study? We’re building out dedicated groups for families to connect. HIE families have a long history of participation in clinical trials in the pursuit of improving therapeutic options and care (it’s why we have cooling!) Currently, there are two trials underway that we are supporting and have set up dedicated groups for: If […]
Our families are all too familiar with the agonizing “wait and see” game that comes with an HIE diagnosis. The uncertainty surrounding our child’s long-term impacts, outcomes, and quality of life is a harsh reality we grapple with daily. We wait for results, we wait for researchers to uncover new therapeutic interventions, and we wait for data that could offer […]
No matter its length, whether it’s a NICU stay, PICU stay, or hospitalization, the experience is often accompanied by trauma, and our HIE families want an anchor amidst the storm. In our recent conversation with Dr. Latrice L. Dowtin, Co-Chair of the National Network of NICU Psychologists, founder and clinician at PlayfulLeigh Psyched, and Hope for HIE Medical Advisory Board […]
Advocacy is important; there’s no doubt about it. But let’s face it: putting it into action can be hard, especially when navigating the complexities of medical care. Between emotions running high, the need to digest large amounts of not-so-easy-to-understand information, and the pressure to make quick but responsible decisions, it’s totally normal to feel overwhelmed. Plus, add in the uncertainty, […]
April 10th is National Siblings Day, and what better day than today to recognize Hope for HIE’s Super Sibs? What’s a Super Sib, you may ask? A sibling of a brother or sister with HIE across any outcome or impact. Sometimes, our Super Sibs can bear a significant load: they are asked to take on a lot, go forth with […]
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