Ehe Foundation

Just Live.

aka The EHE Foundation   |   Hobart, WI   |  fightehe.org

Mission

The EHE Foundation's mission is to seek treatments and a cure for EHE by increasing awareness, pursuing scientific research, advocating for and supporting EHE patients, and collecting and bridging information between researchers, providers and patients.

Ruling year info

2015

Vice President

Julia F. Wahl

President

Jenni Kovach

Main address

1561 Hopi Ct

Hobart, WI 54313 USA

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EIN

47-3238441

NTEE code info

Cancer Research (H30)

Fund Raising and/or Fund Distribution (G12)

Single Organization Support (E11)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

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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?

Cleveland Clinic EHE Research

Ground breaking research by world-renowned pathologist and medical researcher, Dr Brian Rubin, at his EHE lab at The Cleveland Clinic Foundation. Development of mouse model/cell line, genetic screening to identify genetic differences between indolent and aggressive EHE, screening of existing chemical compounds to identify possible targeted therapy for EHE

Population(s) Served
Adults
Caregivers

Where we work

Awards

Grantee Award 2020

Chan Zuckerberg Initiative, Rare As One Project

Affiliations & memberships

National Organization of Rare Diseases 2022

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.

The highest-level goals of The EHE Foundation are outlined in our mission:
➢ Increase awareness of EHE
➢ Pursue scientific research
➢ Bridge information between researchers, providers, and patients
➢ Advocate for and support EHE patients

Priority 1: Scientific Research - maintain and promote a robust pipeline of EHE research.
Priority 2: Increase EHE Awareness - create high-level awareness of EHE for patients,
advocates, health providers and researchers.
Priority 3: Bridging Information - connecting patients and health providers through easily accessible online resources
Priority 4: Advocating for and Supporting EHE Patients - Raising the “voice” of patients to
accomplish our mission through grassroots and community engagement
Priority 5: Operational Growth & Sustainability - efficiently managing operations of the
Foundation to meet organizational needs.

The Foundation will implement our vision and mission through our Board of Directors, an appointed
Medical Advisory Board, our professional staff and the worldwide EHE community.
Vision
To be a catalyst for change in the diagnosis and care of EHE.
Mission
To seek treatment and a cure for Epithelioid Hemangioendothelioma (EHE) by increasing
awareness, pursuing scientific research, advocating for and supporting EHE patients, and
bridging information between researchers, providers and patients.
Values
In fulfillment of our mission, we are committed to these core values in all efforts:
● To our EHE community including patients, families, advocates, health providers
and researchers:
○ We are a trusted and reliable resource for information.
○ We are a support resource that is tireless and unwavering.
○ We foster hope globally for all people affected by this rare cancer.
● In the conduct of our business:
○ We uphold the highest levels of integrity in all our actions.
○ We are a collaborative environment that thrives on teamwork.
○ We promote a culture that respects individuals, and the collective
wisdom of the group.
○ We are responsible stewards of the resources granted to us.

Founded in 2015, The EHE Foundation is a non-profit 501(c)(3) organization dedicated to
the pursuit of effective treatments and ultimately a cure for EHE by increasing awareness,
pursuing scientific research, advocating for and supporting EHE patients, and bridging
information between researchers, clinicians, and patients. The EHE Foundation has made
significant advances toward our mission by:
• Being an essential resource to a global community of over 2,000 patients and
families in over 70 countries.
• Awarding over $250,000 in research grants globally to date.
• Initiating critical patient-led research projects including a Natural History
Study, EHE Biobank, and a Prospective Observational Study.
• Connecting expert clinicians with patients to improve diagnosis and access to
essential specialty care.
• Maintaining a comprehensive publications reference library for clinicians and
patients.
• Facilitating educational and collaborative forums including patients, clinicians
and researchers and organized 2 EHE 360 International Scientific Conferences.
• Working collaboratively with global expert scientists to accelerate essential
model development and disease understanding.

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 the global EHE patient community. This includes EHE patients, caregivers, family members, advocates, and medical providers.

  • 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 strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We asked our global community (through online survey) on what critical issues they face in order for us to highlight solutions through a series of patient-centric webinars.

  • With whom is the organization sharing feedback?

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

  • How has asking for feedback from the people you serve changed your relationship?

    We are now looked at more as a partner, and not a business or authority.

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

    We collect feedback from the people we serve at least annually, 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 engage the people who provide feedback in looking for ways we can improve in response, 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?

    It is difficult to get the people we serve to respond to requests for feedback, Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

Ehe Foundation
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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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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.

Ehe Foundation

Board of directors
as of 5/4/2022
SOURCE: Self-reported by organization
Board co-chair

Jenni Kovach

The EHE Foundation

Term: 2019 -


Board co-chair

Julia Wahl

The EHE Foundation

Term: 2015 -

LeeAnn Conner

Sarah Yaneza

David Casimir

Denise Robinson

Amy Baghdadi

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 05/04/2022

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
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 05/04/2022

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 employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • 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 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 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.