Hope for HIE

What Hope for HIE does

Hope for HIE is a US-based 501(c)(3) nonprofit organization headquartered in West Bloomfield Township, Michigan, founded in 2010 by three parents across three countries and formally incorporated in Michigan in 2013. Its mission is to improve quality of life for children and families impacted by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy (HIE), a type of brain injury with a wide spectrum of outcomes. The organization delivers a portfolio of free programs — peer support through 100+ Facebook groups, 1:1 peer mentorship, credentialed social worker and child life specialist services, weekly video support groups, newly diagnosed family support packages distributed to NICUs, and bereavement, sibling, and teen (SOAR) programming — alongside education, advocacy (HIE Awareness Month, HIE Remembrance Day), and fundraising events (Hustle for Hope 5K, Hope for the Holidays).

The underlying technology stack is intentionally low-friction: Facebook community infrastructure, Zoom video conferencing, the SupportSpot mobile app (provided through partner Child Life On Call), email/newsletter distribution, and a WordPress-based website. The organization's intellectual capital — its Medical Advisory Board, clinical staff, and training curriculum for peer mentors — constitutes its primary technical moat, complemented by trademarked brand assets and a 6,500+ family network spanning the US, UK, and Canada. Strategic research collaborations with academic medical centers (Boston Children's Hospital, University of Wisconsin-Madison) and industry partners (ReLLTe Pharma) extend the platform into clinical trial patient engagement.

Revenue is generated exclusively through donations, corporate giving (Partners in Hope program), grants (e.g., Child Neurology Foundation), and fundraising events; all services are provided free of charge to families. The organization operates with fewer than 10 staff members supplemented by a large global volunteer community including Board Directors, Medical Advisory Board members, Peer Support Mentors, and HIE Hospital Ambassadors. Its go-to-market is community-led, relying on organic social media reach, word-of-mouth through NICU/PICU clinicians, and hospital-based ambassador placements rather than paid acquisition.

Name

Hope for HIE

Legal name

Hope for HIE

Website

https://hopeforhie.org

Company type

Private

Founded year

2010

Operating status

Operating

Headcount range

1–10 employees

Short description

Hope for HIE is a US-based 501(c)(3) nonprofit connecting more than 6,500 families affected by Hypoxic Ischemic Encephalopathy globally through peer support groups, credentialed clinical services, hospital ambassador programs, and research partnerships with academic medical centers and pharmaceutical sponsors.

Ownership category

akta.pro rank

Product category

Nonprofit Family Support Services

NAICS

Child and Youth Services (62411)

SIC

Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Patient advocacy services
• Neonatal brain injury support
• Family peer support
• Nonprofit healthcare support
• Rare disease community

Headquarters

HQ city

West Bloomfield

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Supply Chain, Others

Revenue model

1. Donations and Charitable Contributions: Hope for HIE is a confirmed 501(c)(3) non-profit organization registered with the IRS under EIN 46-4038344. Revenue is generated through donations from individuals, corporate partners (Partners in Hope program), and fundraising campaigns such as Hustle for Hope Virtual 5K and Hops for Hope events.

Go-to-market motion1 record

Distribution channels6 records

Marketing channels15 records

Core offering

Hope for HIE is a 501(c)(3) nonprofit that delivers a comprehensive support network for families affected by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy (HIE). Its core offerings are free peer support programs (online groups, 1:1 mentorship, weekly video support), credentialed professional services (social work, child life), physical support packages distributed to NICUs, advocacy campaigns (HIE Awareness Month, HIE Remembrance Day), and educational resources vetted by its Medical Advisory Board.

Product overview

Hope for HIE is a global nonprofit organization offering a comprehensive support network for families affected by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy. Rather than a unified software product, the organization provides a portfolio of support programs including the Peer Support Network (Facebook-based groups), 1:1 Peer Support Mentorship, professional social worker and child life services, weekly video support groups, and the SupportSpot app by Child Life On Call. Additional offerings include educational resources like the Clinical Trial & Research Hub, printable materials, the Just Say HIE Podcast, and the HIElights of Hope book. The organization runs advocacy initiatives (HIE Awareness Month, HIE Remembrance Day), fundraising events (Hustle for Hope 5K, Hope for the Holidays Giveaway), and community programs (SOAR teen support, Super Sibs sibling support, HIE Hospital Ambassador Program, family conferences and retreats). The portfolio is grounded in three pillars: Awareness, Education, and Support, serving over 6,500 families worldwide.

Differentiator

Problem solved

Functional benefit

Products and services

• Peer Support Network Online support network connecting families affected by Hypoxic Ischemic Encephalopathy through over 100 topic, location, outcome, and demographic-focused Facebook groups. Free for any family affected by HIE globally.
• 1:1 Peer Support Mentorship Sustained 1:1 or on-call mentorship pairing newly diagnosed families with trained peer mentors who have lived HIE experience, typically lasting six months to a year. Free for families.
• Social Worker Support Services
• Child Life Services
• Weekly Video Support Groups
• Newly Diagnosed Family Support Packages Physical support packages distributed to families in NICUs worldwide containing educational materials and curated resources. Distributes to 500+ families annually. Free for newly diagnosed families.
• HIE Hospital Ambassador Program
• Hope for the Holidays Giveaway
• HIElights of Hope Book
• Partners in Hope Corporate Partnership Program Corporate giving and partnership program for organizations supporting the HIE community through financial sponsorship, in-kind contributions, and cause-marketing partnerships.

Quantifiable outcome

• Connected over 6,500 families worldwide
• +3 more outcomes

Named customers3 records

Segments8 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

14 partnerships are on record, tiered core and minor.

• Boston Children's Hospital - Metformin TrialcoreStrategic or Co-development Partner · 1 January 2025Clinical trial partnership testing whether metformin can help support brain healing and plasticity in infants after HIE.
• ReLLTe Pharma / RLS-0071 STAR StudycoreStrategic or Co-development Partner · 1 January 2022Hope for HIE is engaged as a comprehensive support partner for the STAR study evaluating RLS-0071 in newborns with HIE undergoing therapeutic hypothermia.
• Infantile Spasms Action NetworkcoreStrategic or Co-development Partner · 1 January 2019Hope for HIE is a member of the Infantile Spasms Action Network, working collaboratively with other organizations and researchers to raise awareness for Infantile Spasms.
• Rare Epilepsy NetworkcoreStrategic or Co-development Partner · 1 January 2019Participating member in the Rare Epilepsy Network collaborative.
• Newborn Brain SocietycoreStrategic or Co-development Partner · 1 January 2019Participating member in the Newborn Brain Society collaborative focused on newborn brain injury research and care.
• Neonatal Seizure RegistrycoreStrategic or Co-development Partner · 1 January 2019Collaborating member with the Neonatal Seizure Registry working on seizure identification and treatment in HIE.
• American Epilepsy SocietyminorStrategic or Co-development Partner · 1 January 2019Delegation attended AES conference to advocate for HIE families and connect with researchers and clinicians.
• Child Neurology FoundationcoreStrategic or Co-development Partner · 1 January 2019Received grant from Child Neurology Foundation to launch significant educational campaign surrounding Infantile Spasms.
• TREND CommunityminorStrategic or Co-development Partner · 1 January 2018Engaged TREND Community to analyze information sharing and discover the largest unmet needs of the HIE community.
• Child Life On CallcoreTechnology or IntegrationHope for HIE families have free access to the SupportSpot app by Child Life On Call, providing mobile-based support resources.
• COOLPRIME StudycoreStrategic or Co-development PartnerStakeholder partner in the COOLPRIME multicenter study for mild HIE and therapeutic hypothermia.
• University of Wisconsin-Madison TREES LabminorStrategic or Co-development PartnerPartner for SPROUT study focusing on long-term cognitive development of children including those with perinatal brain injury such as HIE.
• Partners in Hope ProgramcoreChannel Partner/ Reseller/ DistributorCorporate giving and partnerships program launched in 2020, including the largest gift to the organization from a Partner in Hope enabling the hire of first Executive Director.
• Seattle Children's HospitalcoreChannel Partner/ Reseller/ DistributorHIE Hospital Ambassador Program site where trained HIE community members provide in-person local support.

Scale indicators7 records

Recent moves8 records

Expansion highlights6 records

Direct peers

• MISS Foundation: Nonprofit providing counseling, advocacy, and peer support to families after the death of a child. Comparable to Hope for HIE's bereavement programming and family-centered grief support model.
• The Compassionate Friends: National nonprofit providing peer support for families grieving the death of a child. Directly comparable to Hope for HIE's bereavement support programming for HIE loss families, including its HIE Remembrance Day.
• First Candle: Nonprofit dedicated to reducing infant mortality and supporting families affected by sudden unexpected infant death and stillbirth. Comparable in mission (infant health support, bereavement, awareness) and family-support service model.
• Graham's Foundation: Nonprofit supporting families of premature infants, including NICU care packages and peer support programs. Highly comparable to Hope for HIE's NICU support package distribution and peer mentorship model for families navigating complex neonatal outcomes.
• Child Neurology Foundation: A nonprofit focused on connecting families affected by neurologic conditions in childhood with resources, education, and research support. Directly comparable as a peer in pediatric neurology family support and a confirmed partner of Hope for HIE.
• Parent to Parent USA: National network providing peer-to-peer support for families of children with disabilities or special healthcare needs. Directly comparable to Hope for HIE's peer mentor model and family-connection mission.
• Newborn Brain Society: Professional society focused on newborn brain injury research and care, including HIE. Comparable as a confirmed collaborative partner of Hope for HIE and a key node in the same clinical-research community.

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy and support organization for rare diseases, including rare pediatric conditions. Comparable as the macro-level rare-disease support and awareness model that Hope for HIE follows at the single-condition level.
• March of Dimes: Large national nonprofit focused on maternal and infant health, including birth injuries and NICU support. Comparable as a broader neonatal health advocacy and family-support nonprofit sharing the NICU family audience with Hope for HIE.
• Epilepsy Foundation: Largest US national nonprofit serving individuals and families impacted by epilepsy, a frequent comorbidity and outcome of HIE. Comparable as a broad-incumbent family-support and research-advocacy nonprofit in the pediatric neurology ecosystem where Hope for HIE operates.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/hopeforhie
• YouTubeyoutube.com/channel/UCe4X-cKRXa85Jv7ESwT804Q
• Facebookfacebook.com/hopeforhie
• LinkedInlinkedin.com/company/hopeforhie
• Instagraminstagram.com/hopeforhie
• Pinterestpinterest.com/HopeforHIE
• TikToktiktok.com/@hopeforhie

Revenue estimate

Valuation estimate

Number of profiles

Profiles16 records

Funding overview

Funding rounds

Investors

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Hope for HIE