PLATINUM2023

Hope for HIE

Ensuring no family faces HIE alone

West Bloomfield, MI   |  hopeforhie.org

Mission

Improving the quality of life for children and families impacted by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy through Awareness, Education & Support.

Notes from the nonprofit

Vision Empowering communities to find hope in the HIE journey. Mission To improve the quality of life for children and families affected by neonatal and pediatric-acquired 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.

Ruling year info

2014

Executive Director

Betsy Pilon

Main address

PO Box 250472

West Bloomfield, MI 48325 USA

Show more contact info

EIN

46-4038344

NTEE code info

Alliance/Advocacy Organizations (G01)

Fund Raising and/or Fund Distribution (E12)

Neurology, Neuroscience (G96)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We are working to generate awareness, education, and support for families affected by Hypoxic Ischemic Encephalopathy.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Family Support

Hope for HIE offers comprehensive support for families of babies and children impacted by neonatal and pediatric-acquired hypoxic ischemic encephalopathy:
-- Part-time social worker on-staff to coordinate support programming, provide outreach to referral organizations, NICUs & PICUs, to connect families to support and local resources.
-- Distributing newly diagnosed family support packages to NICUs and PICUs, worldwide, as well as educational materials translated into seven languages.
-- Hosting a comprehensive worldwide support network connecting over 8,000 families (and counting) across more than 100 topic, location and outcomes-based groups hosted online, but connecting in-person.
-- Extensive support for families facing loss from HIE

Population(s) Served
Families
Infants and toddlers

Working with the leading clinicians, researchers, advocacy collectives and organizations on decreasing the incidence of HIE, and improving the quality of life for children and families impacted by neonatal and pediatric-acquired HIE.

Improvement takes on many forms -- anything from accessibility, to resources to help families, to reduction of the burden of HIE on impacted children and families.

Population(s) Served
Families

Where we work

Awards

Facebook Communities Summit Recognition 2019

Facebook

Affiliations & memberships

Infantile Spasms Action Network 2019

Newborn Brain Society 2019

Rare Epilepsy Network 2019

Videos

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of donations made by board members

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

100% of our Board of Directors financially contribute to our organization.

Total number of organization members

This metric is no longer tracked.
Totals By Year
Related Program

Family Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

1) Ensure no family faces HIE alone.

2) Improve the Quality of Life for children and families impacted by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy.

3) Serve as a connector and collaborator to move forward the state of HIE research to decrease the incidence and impact.

4) Provide comprehensive educational resources that not only educate on HIE, but improve health literacy for our community and beyond.

5) Promote equity in messaging, representation, and funding for HIE support and advocacy in the neonatal and neurology communities.

1) Continue our comprehensive outreach strategy to network and partner with point of diagnosis providers and fellow support organizations to create and grow a referral pipeline to our worldwide support services.

2) Provide services, programming and connections to address the needs of our community within our bounds as an organization, mindfully growing and acquiring sustainable resources to fulfill this.

3) Serve as a connector and collaborator to move forward the state of HIE research to decrease the incidence and impact by networking, convening and participating in patient-centric research on both the academic and industry side, elevating the lived experiences of our community and infusing their insights for the best core outcome measurements.

4) Invest in the development of resources that are accessible, translatable and evidence-based for our community to learn about HIE, the various impacts, current and upcoming therapeutics, promoting safety and efficacy across not only physical, but also emotional, financial and societal domains.

5) Develop a comprehensive plan for support and advocacy in the neonatal and neurology communities, grant writing, and mindful partnerships.

Hope for HIE has mindfully grown, maximizing all resources entrusted to us to allocate human resources to move forward our mission, and do so in a financially sustainable way.

Hope for HIE has an incredible, dedicated community of families, researchers, clinicians and community members with a variety of skill sets and connections to see this through across key areas such as legal, finance, marketing, administration and promotion to continue meeting our growth objectives.

Hope for HIE is the premiere resource for families, clinicians and researchers, worldwide, working towards improving the Quality of Life for children and families impacted by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy.

Our latest Impact Report can be found at hopeforhie.org/impactreport.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve

  • Which of the following feedback practices does your organization routinely carry out?

    We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Hope for HIE
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Hope for HIE

Board of directors
as of 06/07/2023
SOURCE: Self-reported by organization
Board chair

David Ford

Hope for HIE

David Ford

Hope for HIE

Becky Detlef

Hope for HIE

Matt Kegyes

Hope for HIE

Crystal Kostick

Hope for HIE

Amy Cutler

Hope for HIE

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 11/28/2022
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or straight
Disability status
Decline to state

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 11/28/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.