|
|
Family & Community Conference: Event HIElights & Recap
Hope for HIE families, researchers, clinicians, and advocates from around the world came together, online and in-person, for the 2026 Family & Community Conference, held April 24–26 at the Hyatt Regency Boston. Themed around connection, support, and science, the hybrid event welcomed the full spectrum of the HIE community — from newly diagnosed families and seasoned advocates to leading neonatologists and neurologists — creating a rare and powerful space where lived experience and cutting-edge research share the same stage.
| | |
|
Hope Makers:
Motti & Rena Eisen
In honor of Father's Day coming up, we'd like to highlight Motti Eisenbach and his family. Motti is one of our newest Peer Support Mentors, a generous donor, and he and his wife, Rena, are parents to Temima, who has HIE. Since the beginning of the year, they have collectively raised nearly $12,000 for Hope for HIE through various fundraising efforts. Featured on our blog, Motti shares his "why" for giving back to this community after connecting with our resources when his daughter was born.
| | |
|
Research Update:
New Funding Mechanism Opens for HIE Research
Hypoxia has been included as a FY26 CDMRP peer reviewed medical research program topic area, which creates a meaningful pathway for HIE researchers studying neonatal and pediatric hypoxic injury to pursue federal funding. Hope for HIE strongly encourages teams in neonatology, neonatal neurology, pediatric neurology, maternal-fetal medicine, critical care, rehabilitation, developmental pediatrics, neuroimaging, therapeutic development, and outcomes research to review the opportunity and consider submitting applications.
| | |
|
Meet Laura,
New Peer Support Mentor
We're so excited to welcome Laura Hébert to our Peer Support Mentor program! Based in Canada, Laura is an HIE mom and speaks both English and French. We're thrilled to continue to strengthen our ability to support families around the world who are impacted by HIE.
"I want to show parents that hope exists, even when the path feels impossible. I’m living proof that even in the hardest journey, life can still be beautiful - and that taking care of yourself is not selfish, it’s just as important as caring for your child."
| | Take Three: Awareness, Education, Support | | Behavioral and mental health challenges, including anxiety, attention differences, and emotional dysregulation, are more common among children with HIE than many families and providers realize. These challenges often go unrecognized by the medical system, particularly in children who appear to be developing typically in early screenings. Understanding why these challenges emerge, how to identify them earlier, and which interventions are most effective for this population remains a key priority for the HIE community. | | |
In this Peer Perspective panel, Hope for HIE social worker Jen Schaefer was joined by community members and HIE parents, Kat K., Ravi S., and Kori M., who shared their experiences navigating their own mental health journey after their child's HIE diagnosis. Together, they discussed the journey that led to finding support, what specific supports have helped, and acknowledged the complexity of navigating an HIE diagnosis while parenting and making space to care for yourself too.
Explore the key takeaways and watch the Q&A at the link below.
| | |
In our recent Child Life Q&A, Annie Gunning, CCLS, and Dr. Sami Horani, Anesthesiologist and HIE parent, came together for a conversation all about anesthesiology and special considerations for HIE families.
During the session, they explored who's on an anesthesia team, types of anesthesia, HIE-specific medical considerations, how to prepare, what to expect, and questions to ask your team.
Explore the key takeaways and watch the Q&A at the link below.
| | | | |
