May 2026

Reflecting on a Meaningful Month of HIE Awareness and Looking Ahead

We wrapped up HIE Awareness Month with the beginning of May and wow, what a month! April brought so many together as one community with a shared vision: to raise awareness for HIE and to improve the qualify of life for children and families impacted by HIE.

HUSTLE FOR HOPE

Our annual Hustle for Hope fundraiser has nearly concluded, with one more in-person event in Detroit, MI coming up this weekend. This year, we had a total of 15 in-person events hosted by family and community volunteers! If you haven't participated and would like to, I invite you to gather with some friends or family and complete the Virtual 5K from the convenience of your own neighborhood! Registration closes this Friday and you can 5K your way anytime through May 31st.

HOLD-A-THON

The inaugural year of the HIE Hold-A-Thon, a global initiative in partnership with the Newborn Brain Society, was also a resounding success! Over 40 NICUs worldwide participated throughout April and we're hopeful that the resources, training videos, sample protocols, and support available will be a powerful catalyst for implementing therapeutic touch and holding during cooling in more NICUs this year and beyond.

FAMILY & COMMUNITY CONFERENCE

During the last weekend of April, we gathered with families, clinicians, researchers, and partners in hope for our first-ever Family & Community Conference in Boston. The entire weekend was surreal, beginning with a beautiful community celebration with performances by HIE parents, Mike Medved and Laura Sánchez. The rest of the weekend included science and research updates from our Medical Advisory Board members and staff, insightful support and advocacy sessions led by families, and meaningful connections and collaborations. The efforts from our staff, panelists, and those in attendance, both in-person and virtually, truly made for a special event. We'll be sharing a full recap soon!

HOPE GROWS!

Finally, I'm thrilled to announce some exciting organizational updates! We onboarded a new staff member, Samia Tasmim, to a newly created Research Associate role to support our quickly growing research programs and partnerships. Three new members have joined our Board of Directors, with decades of expertise in biopharma, public health communications, entrepreneurship, and health equity. We also announced the addition of seven new Medical Advisory Board (MAB) members, representing disciplines from obstetrics and maternal-fetal medicine, neonatal nursing, neuropsychology, and beyond.

A special shoutout to our INCREDIBLE staff and volunteers that made all of the above happen. And, to our consistent supporters whose investment in Hope for HIE ensure we have the resources to continue making a global impact.

It truly takes a village, and we have the best one!

With hope always,

Betsy

Betsy Pilon

Executive Director

Support Hope for HIE

Newly Diagnosed Family Support Group

1st Thursday of every month @ 8 pm ET

After the First Year (Through Age 9)

May 12 @ 12 pm ET

Loss Family Support

2nd Thursday of every month @ 8 pm ET

HIE & Mild Outcomes

May 18 @ 8 pm ET

Dads & Non-Birthing Partners

May 20 @ 8 pm ET

Pregnancy After HIE Loss

May 27 @ 8 pm ET

Parent-to-Parent Pop-In Hour

May 28 @ 8 pm ET

See all Hope for HIE Events

Support groups, educational Q&As, retreats, and more.

Event Calendar

Staff Update: Welcoming Samia Tasmim

We're excited to announce the addition of Samia Tasmim to the organization as Research Associate. Samia brings an extensive background in research, medical writing, and science communication to the role. She will be supporting key organizational priorities including the PCORI Convening Award, research partnerships, and the HIE Registry.

She will also help advance our efforts to synthesize and communicate clinical evidence, strengthen relationships with research partners, and move the needle on initiatives that improve outcomes for children and families impacted by HIE.

HIE Awareness Month: Family Spotlights

Every April, HIE Awareness Month serves as a perfect time to elevate the voices of our community and our families. By sharing our stories and experiences with one another, we help to shape research and support services, and we build a stronger community and light the path brighter for the families to come.

These stories share a small part of each family's journey with their child's HIE diagnosis. They encourage us by sharing their sources of strength through hard times, how hope looks different today than in the very beginning, and why they choose to Hold onto Hope through it all.

Research Update: What Does Life Look Like as an Adult with Neonatal HIE?

At Hope for HIE, one of the questions we hear most often from families is: What will my child's life look like when they grow up? It's one of the hardest questions to answer — and until recently, one of the least studied. A new paper published in the journal Neuropediatrics takes a meaningful step toward filling that gap, not with test scores or clinical checklists, but with something far more powerful: the voices of four adults who were born neonatal HIE and are now telling their own stories.

Learn More

Take Three: Awareness, Education, Support

Access to mental health support and resources is critically important for families who find themselves in the NICU and PICU. Parents whose children are admitted to the NICU or PICU have a 45-50% greater incidence of mental health disorders such as PTSD, Anxiety & Depression. Families need to be connected to both peer support and mental health support.

There also remains significant inequity for non-white, non-preemie, non-maternal patients and families in the NICU, often leading to feeling disconnected from support. Providers can help to minimize mental health impacts by practicing trauma-informed care.

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Navigating an HIE diagnosis is its own complex journey—and for some families, that path eventually leads to a second diagnosis: autism.

In our latest Peer Perspective Series stream, our social worker, Jen Schaefer, was joined by community members Crystal F., Kacie M., and Crystal E., who shared their lived experiences at the intersection of HIE and autism. Together, they explored the diagnosis journey, daily life, school and therapy supports, and the hopes and lessons that carry them forward.

Explore the key takeaways and watch the Q&A at the link below.

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Every April 20th, we come together as a community to honor and remember the children lost to HIE too soon and the families who carry them forward every day. In our recent Child Life Q&A we sat down with Annie Gunning, Certified Child Life Specialist and Grief Counselor, for a conversation centered around remembrance — and the grief that lives alongside it.

During the session, she explored meaningful ways to remember children and siblings, ways to honor them in everyday life and on special dates, how to support grieving siblings while navigating your own grief, and how grief looks different in children.

Explore the key takeaways and watch the Q&A at the link below.

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