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-PF.

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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:
-- 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 7,000 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

Newborn Brain Society 2019

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.

Goal #1:
Establish Hope for HIE as a legal, 501(c)(3) entity based in the US, but with a worldwide reach.
(completed 2014)

Goal #2:
Create financial sustainability for the organization.
(ongoing for the first five years, and setting a new course to get resources to add paid staff in the next five years)

Goal #3:
Become the premier source families connect with after a diagnosis of HIE.
(We are widely recognized as the premier source of support for families with HIE, worldwide)

Our next big organizational goals include:

Goal #1: Partnering with key researchers, medical entities, and stakeholders to look at how we can decrease the incidence of HIE.

Goal #2: Partnering with key researchers, medical entities, and stakeholders to look at how we can increase therapeutic treatment options to optimize each child's potential.

Complete necessary paperwork at the local and federal levels to ensure the organization is structurally compliant with applicable laws. (done - 2014)

Establish a US-based Board of Directors with people who are passionate, share the vision, and are committed to achieving Hope for HIE’s maximum potential.
(done - and ongoing)

Set up a worldwide steering committee to help lay the foundation for future global growth.
(done - established in 2013 and continue to have global stakeholders on committees, etc.)

Establish a sound accounting system with proper checks and balances ensuring a workable structure is in place.
(done for the first five years - working on setting up a strategic plan for growth for the next five years to move from 100% volunteers to being able to bring on paid staff, as we are hitting the ceiling of what unpaid volunteers can do)

Build and implement a fundraising plan with multiple revenue streams.
(done and ongoing - working on finding major gift donors and appropriate partners and sponsors to fund our initiatives)

Capitalize on applicable free and low-cost resources available to 501(c)(3) organizations to streamline operations and minimize costs.
(ongoing)

Create a website to be the hub of all communication and resources for the constituents and families benefiting from the organization.
(done! website redesign is underway in 2020)

Outreach outlined to develop groups in geographies beyond the U.S.
(done and ongoing)

The sheer number of established members throughout Hope for HIE-affiliated networks worldwide should allow Hope for HIE to flourish and start the dialogue to spread awareness of HIE, if done so in a coordinated effort.

Hope for HIE has dedicated people with a variety of skill sets and connections to see this through across key areas such as legal, finance, marketing, administration and promotion.

Five years into our organizational journey, we have grown our network from 200 families to now serving over 5,000 worldwide, with more finding us every day.

We have built a significant amount of awareness with clinicians and social workers of our network, capitalized on social media engagement and communication, built and optimized our website for search engines, and have developed several support programs through our foundation.

2019 saw an incredible period of growth and awareness of Hope for HIE, with several researchers and clinicians asking to collaborate on several projects that will move forward in 2020 and beyond.

We engaged with a company called TREND Community to analyze the community discussions of the last 9 years, netting in a Community Voice Report that outlines our community unmet needs, as well as insights into the HIE family experience. This report has allowed us to affirm what we already know in our community, and work to move the organization forward to the next level.

We have highly engaged volunteers, a network of over 100 location-based and topic-focused groups, a recognized highly-engaged community of over 92% actively participating families.

We launched retreats and meet ups for our families, including regional family retreats and biannual Mega Mom Conference Retreats, where families can come together and network.

Our families are leading the way in advocacy for legislative priorities to best take care of our children medically, educationally, emotionally, and socially.

We have been asked to have representation at several key conferences, and in medical societies.

We will continue moving forward focusing on continuing to first and foremost, serve our families with support, and move into two big arenas of finding ways to 1) decrease incidence of HIE and 2) improve therapeutic treatments, advocating for medical, educational and societal improvements to ensure each HIE child can reach their individual potential.

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.
  • Who are the people you serve with your mission?

    We serve children and families impacted by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy, worldwide, as well as clinicians and researchers dedicated to improving the quality of life for our population.

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

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • 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,

  • What significant change resulted from feedback?

    We have heard that our loss community does not feel as heard or represented in our communication and support. We sent one of our loss administrators to peer-to-peer training to develop and implement improvements and serve as a more active voice in programming and planning, and have implemented additional loss support and recognition.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

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

    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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  • 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 9/27/2021
SOURCE: Self-reported by organization
Board chair

Betsy Pilon

Hope for HIE

David Ford

Hope for HIE

Annie Goeller

Hope for HIE

Lindsay Vanzandt

Hope for HIE

Matt Kegyes

Hope for HIE

Jennifer Kegyes

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 ? Not applicable
  • 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 12/23/2019

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

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

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data