Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

Who We Are

HOPE IS FOUND IN
THE JOURNEY

We are the premiere global organization dedicated to Awareness, Education & Support for Neonatal & Pediatric Acquired Hypoxic Ischemic Encephalopathy (HIE).

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WHO WE ARE

We believe that hope is found in the journey, regardless of outcome.

Hope for HIE began as a virtual network of parents seeking to connect after their children had been diagnosed with HIE (Hypoxic Ischemic Encephalopathy). Since beginning on Facebook in 2010, the network has grown to serve thousands of families worldwide. The organization was incorporated legally in the state of Michigan in 2013, confirmed as a 501c3 nonprofit in 2014, and is governed by a U.S.-based Board of Directors

Hope for HIE’s Board of Directors is responsible for the strategic direction and management of foundation operations, through a paid Executive Director. We have a robust internationally-represented volunteer community that helps facilitate our support network and organizational initiatives.

We hope you will join us as we work together to improve the quality of life for children and families through developing more resources, education and support for families like ours. You can help most by becoming more involved. Donate, volunteer or help us spread the word about Hope for HIE.

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MISSION STATEMENT

To improve the quality of life for children and families affected by Hypoxic Ischemic Encephalopathy through awareness, education and support.

 

Vision

Empowering communities to find hope in the HIE journey.

Mission

To improve the quality of life for children and families affected by Hypoxic Ischemic Encephalopathy through awareness, education and support.

Core Values
  • Advocacy – We will actively advocate for our children and fellow families. We will relentlessly pursue a world where HIE families can fully realize their potential.
  • Empathy – All families and children who experience HIE deserve empathy for the path they are on, no matter the outcome.
  • Integrity – We will be who we say we are, work together honestly and direct ourselves toward building the organization for the greater good.
  • Unity – We will be open and honest with each other. We realize we are stronger together and group needs are stronger than individual agendas.
  • Reflection – We will carefully analyze all decisions that are made and adjust the scope or expectations in order to best benefit the HIE community at large.
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PEOPLE

Our positive power is in our people, bringing together families, clinicians, researchers and the global community.

Hope for HIE is a US-based 501(c)(3) non-profit organization with a worldwide support network and presence, dedicated to promoting awareness, education and support for Hypoxic Ischemic Encephalopathy (HIE). The organization was incorporated legally within the State of Michigan in 2013, confirmed by the IRS in 2014, and is governed by a US-based Board of Directors. Our Board is 100% volunteer-based.

Hope for HIE’s Board of Directors:
  • Betsy Pilon – Executive Director, Ex-Officio
  • David Ford – President
  • Matt Kegyes – Treasurer
  • Becky Detlef – Secretary
  • Annie Goeller – Vice President, Marketing & Public Relations
  • Jennifer Kegyes – Vice President, Family & Professional Outreach
  • Crystal Kostick – Director at Large

Our volunteer community is large and located in multiple countries around the world. The United Kingdom, Australia, Canada and the United States are our largest represented countries today. Because our mission is to have international reach, this important group of volunteers (mainly parents) give time, talent and treasure to six committees that support Hope for HIE’s mission and vision with a wide range of skills and experience.

Medical Advisory Board:Hope for HIE’s Medical Advisory Board is a multidisciplinary board that provides insight, scientific direction, and expertise to the Foundation from leading academic and medical institutions around the world. The members of the Medical Advisory Board are recognized experts in treating patients, leading research on HIE, and developing best practices in treating HIE and supporting families in their respective disciplines.

Led by Jennifer Kegyes, MA, CCC-SLP, Hope for HIE’s Professional Outreach Chair, this board meets regularly and works on a variety of initiatives to provide insight on patient and family educational materials to ensure accurate information is published, identify collaborations for the foundation, and working with foundation leadership to move the mission of Hope for HIE forward.

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SPEAKERS BUREAU & MEDIA INQUIRIES

We are the worldwide voice of families who have children with Hypoxic Ischemic Encephalopathy

We are the worldwide voice of families who have children with Hypoxic Ischemic Encephalopathy, recognized by organizations such as the NIH, NHS, AAP, AAN, ACOG, and even Facebook, for bringing our community together.

Looking for a subject matter expert for a news story?
Our Executive Director and Board of Directors can serve as or source subject matter experts. Email admin@hopeforhie.org to get started.

Looking to book a speaker for your next event or conference?
Book a Hope for HIE speaker today for your next conference, meeting or event. Hope for HIE board of directors, members, and volunteers can provide in-depth professional storytelling on a variety of topics that are related to patient care, families, caregiving, disabilities and more.

Speaking from experience
When it comes to choosing a speaker for your next event or medical education gathering, partner with Hope for HIE, the worldwide voice of families who have children with Hypoxic Ischemic Encephalopathy.

These professionals, parents and families are ready to share their knowledge with you through the Hope for HIE Speakers Bureau – a collection of groundbreaking topics you can’t find anywhere else.

Topics:

  • Patient and family-centered care
  • Neonatalogy
  • Pediatric neurology
  • Neonatal ICU
  • Pediatric ICU
  • Developmental pediatrics
  • Pediatric gastroenterology
  • Pediatric pulmonology
  • Pediatric critical care
  • Ob/gyn & obstetrics
  • Life in the NICU
  • Life after the NICU
  • Maternal mental health
  • Caregiving for children with complex disabilities
  • Advocating for your child
  • Medical advocacy

  • Legislative advocacy
  • Educational advocacy
  • Palliative care
  • End of life care
  • Bereavement
  • Finding courage after unexpected circumstances
  • Finding hope in the darkness
  • Cultivating a community of support
  • Navigating insurance
  • Partnering with community services
  • Planning inclusive playgrounds
  • Designing a home for accessibility

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