During HIE Awareness Month, we shine a light on the stories, people, and progress shaping our community. This week, we’re turning the spotlight toward the dedicated members of Hope for HIE’s Board of Directors and Medical Advisory Board — parents, professionals, and advocates who lend their time, talents, and expertise to guide our mission forward.
We invited our Board of Directors to share what fuels their dedication, what fills them with pride about our organization, and what gives them hope as we look ahead. We asked our Medical Advisory Board to reflect on the impact of advocacy, research, and collaboration in transforming HIE care — and to share their vision for what comes next.
These reflections highlight the expertise and experience driving our leadership—and the focus on building better systems of care and support for families affected by HIE.
Serving on the Board of Directors for Hope for HIE is deeply personal for me. This organization has truly changed the trajectory of our lives as an HIE family, and I feel incredibly grateful to give back in a meaningful way. My hope is that every family facing an HIE diagnosis knows they are not alone. If I can help extend the reach of this support—even to just one more family—that’s what it’s all about. No HIE family should ever have to navigate this road in isolation.
As a NICU nurse, it’s been incredible to witness the growth of our support services, especially for newly diagnosed families. It brings me so much joy to see parents in the hospital connecting with these resources early on—often at a time when they need it the most. That kind of immediate, compassionate support can be life-changing.
I’m also incredibly hopeful about the future. The level of research and clinical collaboration happening right now around HIE is both exciting and inspiring. New approaches to prevention and treatment are on the horizon, and it’s encouraging to know that Hope for HIE is helping drive that momentum. We are not just supporting families in the here and now—we’re also contributing to lasting change in the way HIE is understood and cared for.
With hope,
Crystal Kostick
Over the past two decades, we’ve seen extraordinary progress in the care of infants with HIE—progress that’s largely been driven by innovative research and advances in neonatal medicine. But even with these strides forward, there are still significant gaps in care that we can’t ignore.
Despite the use of therapeutic hypothermia and modern neonatal interventions, too many children still face lifelong challenges. That reality pushes us to keep asking: how can we do better?
I believe we have the potential to shift the entire paradigm of HIE care. By focusing on developing new neuroprotective and pro-plasticity treatments, we can open up real possibilities for improving outcomes—and, more importantly, improving lives.
But to get there, we need continued investment in groundbreaking research. And just as importantly, we need strong, collaborative partnerships between patients, families, and investigators to ensure that future treatments are designed with compassion, relevance, and real-world impact.
There’s more work ahead, but I’m hopeful. Because together, we can build a future of care that goes far beyond cooling—and gives every child the best possible chance.
With hope,
Brian Kalish
Volunteering my time on Hope for HIE’s Board of Directors is deeply meaningful to me—not just because I care about the mission, but because I’m also part of this community. Like so many of you, my family has walked the path following a diagnosis of HIE. Being involved in this organization gives me a way to give back and help other families feel less alone.
Through my work with Hope for HIE, I’ve had the privilege of helping foster connection, increase access to educational resources, and advocate for those navigating this journey. One of the things I’m most proud of is how this organization has stayed committed to building a global community of support. The network has grown so much over the years—creating an inclusive, welcoming space where families can share their stories, find guidance, and draw strength from one another.
Looking ahead, I feel hopeful. Awareness of HIE is growing, and research is continuing to push forward. With more recognition and advances in neonatal care and early intervention, there’s real potential for improved outcomes and stronger support systems for families like ours around the world.
Thank you for being part of this community. Your presence and participation are what make this work matter.
With hope,
Amy Cutler
As a Certified Child Life Specialist working in a Level 3 NICU, I’ve had the privilege of witnessing how powerful advocacy, research, and collaboration can be in shaping care for families impacted by HIE.
I’ll never forget the moment one of my patient’s mothers received a care kit from Hope for HIE. She was sitting beside her son’s crib during cooling, surrounded by the steady hum of life-saving machines. When she opened that kit, something shifted. She looked at me and said how scared and alone she felt—but in that moment, she also felt seen. That small gesture reminded her that she wasn’t alone, and that her experience mattered.
That’s the kind of impact we can make when we center families in care. Thanks to the tireless work of parent advocates and organizations like Hope for HIE, we’re seeing meaningful progress—earlier interventions, more family-centered care, and a growing recognition that emotional and psychosocial support is just as important as clinical treatment.
Looking ahead, I believe the next steps are clear: we must continue to expand access to psychosocial support across all healthcare settings—whether that’s through bedside care or virtual programs like Child Life On Call. We need to keep amplifying parent voices and ensure that research is translated into real-world tools families can actually use. And we must keep pushing to educate healthcare professionals on the importance of emotional safety, empowerment, and family inclusion as a standard of care—not a bonus.
Hope for HIE’s model of collaboration between families and the medical community is already making a difference. I’m honored to support their mission and to stand alongside so many who believe in a more compassionate and connected future for HIE care.
With hope,
Katie Taylor
As a pediatric palliative care physician and researcher, I’m deeply encouraged by the ways patient and family perspectives are increasingly being centered in medical care. These perspectives are essential—not just as context, but as guiding voices in how we understand and deliver humanistic, compassionate care.
Through our photo-narrative and visual narrative collaborations, we’re helping bring these deeply human stories to the forefront. Using imagery and storytelling, we’re able to capture and share moments that reflect not only the challenges families face, but also their resilience, the joy they find, and the meaning they create—even in the most difficult circumstances.
These stories are powerful. They remind us that quality of life isn’t just a clinical measure—it’s deeply personal and grounded in connection, love, and the small moments that matter most.
What brings me hope is seeing how these creative and collaborative efforts are shaping more inclusive care. When families are truly heard and their stories honored, we move closer to a healthcare system that treats the whole person—not just the condition. And that’s where real progress begins.
I’m proud to support Hope for HIE and its commitment to amplifying family voices and advancing care through research, advocacy, and storytelling. Together, we’re building something meaningful.
With hope,
Jori Bogetz
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