Disease, Disorders, Medical Disciplines

Hope for HIE

Ensuring no family faces HIE alone

West Bloomfield, MI

Mission

To foster hope in families affected by HIE (hypoxic ischemic encephalopathy) through support, education, and awareness.

Notes from the Nonprofit

Vision Empowering communities to find hope in the HIE journey. Mission To foster hope in families affected by Hypoxic Ischemic Encephalopathy (HIE) 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

2014

President

Betsy Pilon

Main Address

PO Box 250472

West Bloomfield, MI 48325 USA

Keywords

hypoxic ischemic encephalopathy, neurology, children, pediatrics

EIN

46-4038344

 Number

3726621180

Cause Area (NTEE Code)

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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Social Media

Blog

Programs + Results

What we aim to solve

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

Our programs

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

SOURCE: Self-reported by organization

Family Support

Advocacy

Where we work

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

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.

We will measure our outcomes by the amount of people who engage with us to find support, seek resources and education.

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

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

Source: Self-reported by organization

the feedback loop
check_box We shared information about our current feedback practices.
How is the organization collecting feedback?
We regularly collect feedback through: 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 the organization using feedback?
We use feedback to: 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.
With whom is the organization sharing feedback?
We share feedback with: the people we serve, our staff, our board, our funders, our community partners.
What challenges does the organization face when collecting feedback?
It is difficult to: we don't have any major challenges to collecting feedback.
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.

External Reviews

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

Photos

Financials

Hope for HIE

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  • Forms 990 for 2017, 2016 and 2014
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Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2017, 2016 and 2014
  • A Pro report is also available for this organization.

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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

No

ETHICS & 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?

No

Organizational Demographics

Who works and leads organizations that serve our diverse communities? This organization has voluntarily shared information to answer this important question and to support sector-wide learning. GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

SOURCE: Self-reported; last updated 12/23/2019

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

Sexual Orientation

No data

Disability

No data