January 2026

 

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Wrapping the Year with Hope and Looking Ahead Together


As we step into a new year, I find myself reflecting with deep gratitude on all that 2025 represented for Hope for HIE. It was a year defined by shared momentum—expanded research partnerships, strengthened support programs and services, and setting the course for the next five years of organizational growth to meet our mission. From our first-ever Leadership Summit this fall to our growing presence in medical, advocacy, and policy spaces, one truth remains clear: hope grows when it is shared. None of this progress happens in isolation, and I am continually inspired by the families, staff, board members, Medical Advisory Board, partners, and supporters who make our mission possible.


That commitment to shared progress is especially evident in the research and education we continue to bring to our community. This month, we highlighted an important milestone through our Q&A with Dr. Brian Kalish on the Metformin Clinical Trial at Boston Children’s Hospital—a study exploring how a well-established medication may support brain plasticity and development in infants with HIE beyond the NICU. Bridging families to emerging science, trusted experts, and transparent information is central to our work, and this trial reflects our belief that thriving extends far beyond survival.


We are also excited to announce that registration will soon open for our first-ever Family & Community Conference, taking place April 24–26, 2026, in Boston. This gathering will bring families, clinicians, researchers, and advocates together in one space—learning from one another and shaping the future of HIE care side by side.


As we close this season, I am also moved by the collective generosity shown through our Giving Tuesday Fundraiser and 12 Days of Hope. The stories shared—of connection, advocacy, resilience, and love—are a powerful reminder of why this work matters. Your support ensures families around the world have access to education, peer connection, and hope when they need it most.


Together, we closed 2025 strong and we're carrying that momentum forward—into continued program growth, expanded research, and deeper impact through 2026 and beyond. Thank you for standing with Hope for HIE and for believing, with us, in a future filled with possibility.



With gratitude and hope,

Betsy


Betsy Pilon

Executive Director

Loss Family Support

2nd Thursday of every month at 8 pm ET

Register Here


Work Life Balance with HIE

January 12 @ 8 pm ET

Register Here


Newly Diagnosed Family Support Group

January 15 @ 8 pm ET

Register Here


Pregnancy After HIE Loss

January 20 @ 12 pm ET

Register Here


Parent-to-Parent Pop-In

January 26 @ 12 pm ET

Register Here


See all Hope for HIE Events 

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

Event Calendar


 
 
 
 
 

12 Days of Hope Recap


As the season of giving unfolded, Hope for HIE was honored to conclude 12 Days of Hope—a heartfelt reflection on the many ways our community shows up for families around the world impacted by hypoxic ischemic encephalopathy (HIE).


Over twelve days, we shared powerful stories directly from our families, volunteers, and advocates—stories told in their own words. Each one served as a reminder of why our mission matters and how community, advocacy, and connection truly change lives.


This year-end fundraiser was powered by our community and we are grateful for your generosity and commitment to ensuring no family faces HIE alone.

 
 
 

Peer Perspective Series: Advocating in the NICU

Every HIE journey is different — and yet, there are powerful threads that connect families across experiences, diagnoses, hospitals, and years. In this Peer Perspective Series conversation, Brigid and Ana, both mothers of children with HIE, shared their lived experiences as full-term NICU families and how those experiences shaped their paths into advocacy, healing, and connection.


We're sharing the key notes from the Peer Perspective Panel, along with a link to the full video on YouTube.

 
 
 

Advocacy at Seattle Children's Hospital

We are proud to share that Tina Santos, our Hospital Ambassador at Seattle Children's, a veteran Hustle for Hope 5K host, and an HIE parent herself, is now a member of the Seattle Children's Family Advisory Board.


In this new advocacy role, Tina gives a voice to our HIE families through her lived experience within the community.


Are you interested in getting more involved? Check out our volunteer opportunities!

 
 

Take Three: Awareness, Education, Support

Are you looking for ways to get more involved in the Hustle for Hope 5K and contribute to growing HIE awareness? There are many ways to contribute this year! You may considerate volunteering at a local event, sponsoring a Hustle for Hope event, putting together a fundraising effort, or hosting your own local event! 


We'd love to hear your ideas or share more information on available sponsorships, hosting, or how you can volunteer this April.


Please email our Program Manager, Mary Boyle, at mary@hopeforhie.org.

Hope for HIE is committed to connecting families with cutting-edge research and the experts advancing care. In a recent conversation with Dr. Brian Kalish of Boston Children’s Hospital, we explored an exciting new clinical trial investigating whether metformin—a long-standing diabetes medication—could support brain development and healing in infants with HIE.


If you missed the live Q&A, we linked the full YouTube video and key takeaways in the full blog post.

Our Peer Support Mentor program continues to grow globally! We are proud to welcome Julie Ndung'u, our newest Peer Support Mentor and HIE mom. Julie is based in Kenya, strengthening our ability to support families around the world who are impacted by HIE.


Adding another international mentor is a powerful reminder that HIE knows no borders, and neither does our community. Families everywhere benefit from connection, understanding, and support from someone who has truly been there. Our mentors bring lived experience, compassion, and hope to parents navigating some of the most challenging moments of their lives. Learn more about Julie, her family, and her journey alongside daughter.

 
 

CONTACT US

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Outreach@hopeforhie.org


PO Box 250472

West Bloomfield Township

Michigan 48325

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