November 2025

Bringing the Community Together

As we move into November and the season of gratitude, I want to take a moment to thank each of you for the incredible energy, compassion, and connection you’ve brought to Hope for HIE this year. The past few months have marked exciting growth.

International Research Advocacy Wins

The international research advocacy we have pushing for years has paid off -- September was filled with elevating the unmet needs of our community in THREE important conferences with the FDA, Critical Path Institute, and IQ Consortium, and the launch of the Neonatal Brain Injury Collaborative that we have helped start with the International Neonatal Consortium.

We also have completed the pilot grant of our HIE Registry with great success, which drives us to build better infrastructure to build out the registry for our global community to participate in, thanks to Maggie Jalowsky, Hope for HIE's Clinical Research Program Manager, and Dr. Danielle Barber, Principal Investigator of the HIE Registry, and Hope for HIE board member.

Leadership Summit & Family Conference Announcement

In October, we held our first ever hybrid Leadership Summit, bringing together our staff, boards, volunteers and partners to give input on the direction of our support programs and research roadmap.

We also announced we will be holding our first-ever Family and Community Conference April 24-26, 2026 in Boston, thanks to a generous convening grant we received from the Patient-Centered Outcomes Research Institute. Look for more information in January on attending.

Staff Changes to Meet Organizational Growth

This year has been an important time for Hope for HIE, working to set up further structure to meet the demand of our success growing our mission, and reorganizing some of our staff positions accordingly. We recently began offering social work student internships with MSW student Kimberly Taylor, and brought on Mary Boyle, our new program manager, Jacquelline Garborg, communication coordinator, as well as rescoping Allison Moise's role into Program Coordinator.

We connect and support nearly 12,000 families worldwide, and having the staff to ensure we have the operational and support resources we need to scale and sustain is a signficant organizational priority.

As 2025 draws to a close, I’m filled with gratitude for how far we’ve come. Together, we’ve strengthened programs, deepened global partnerships, and elevated the family voice in research and advocacy.

Now, as we head into Giving Tuesday and the season of generosity, I invite you to join us once again—through your time, your story, or your gift—to ensure no family faces HIE alone. Every act of giving fuels connection, compassion, and progress.

Most sincerely,

Betsy

Betsy Pilon

Executive Director

Support Hope for HIE

Staff Update: Strengthening Our Operations & Communication

We are so excited to welcome Mary Boyle, our new Program Manager, and Jacquelline Garborg, in the newly created Communication Coordinator role.

Both began their tenure with Hope for HIE this week, and you can learn more about their expertise and roles below.

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Hybrid Leadership Summit: Planning the Future of Hope

In October 2025, Hope for HIE leaders, volunteers, clinicians, and research partners gathered in Charlotte, North Carolina, and online from all over the world, for our first ever Leadership Summit—a time to reflect, collaborate, and build the future together.

This year’s theme, “Turning Connection into Collective Action,” perfectly captured what makes this community unique: the power of families and professionals working side-by-side to transform outcomes for children and families affected by neonatal and pediatric-acquired hypoxic-ischemic encephalopathy.

Advancing Global Advocacy & Research

Hope for HIE has been a driving force collaborating with the International Neonatal Consortium (INC) under the Critical Path Institute (C-Path) to launch the Neonatal Brain Injury Collaborative (NBIC)—a global public-private partnership dedicated to accelerating drug development and research for babies with HIE and other neonatal brain injury.

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Take Three: Awareness, Education, Support

November is Epilepsy Awareness Month. Hope for HIE has developed comprehensive educational resources across the lifespan and outcomes.

All month long we will be sharing information, updates on newly published research, and sharing the stories of children and families living with epilepsy in our global community.

We also encourage everyone to get Seizure First Aid training, which is available online.

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When your child has a diagnosis like HIE or cerebral palsy, you may be digging through the internet for hope -- and stumble upon people using unregulated treatments such as Hyperbaric Oxygen Therapy (HBOT).

But, is it safe? Effective? Or is it another example of hype that overpromises and underdelivers with a big price tag? It seems to make sense on the surface, wouldn't pressurized oxygen at 100% be good for a hypoxic brain injury? Let's talk about it:

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"How do I talk to my child about their HIE diagnosis?" is one of the most common questions we hear from parents—and for good reason. It's a big topic, and it comes with a lot of uncertainty:

How do you explain something so complex in a way your child can understand? What if they never bring it up? What if they ask more than you're ready for? It's okay to feel unsure—this is a process, not a one-time conversation.

Annie Gunning, CCLS, GA-C, breaks it down in our recent Q&A.

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