PLATINUM2022

HYPEREMESIS EDUCATION & RESEARCH FOUNDATION

The global voice of HG.

aka HER Foundation, HELPHER Foundation   |   Clackamas, OR   |  www.hyperemesis.org

Mission

The HER Foundation is the world's largest network of HG survivors and the leading resource for HG information. In 2003, HER became the global voice of hope and understanding for women with HG. Our mission is to find a cure through research, to provide education and support for those seeking effective management strategies, and to provide them with clinical resources. Goals: 1. Minimize suffering & complications. 2. Eradicate morbidity & mortality. 3. Improve outcomes. 4. Promote a universal protocol. 5. Raise public awareness & improve policies. 6. Educate practitioners & caregivers. 7. Expand clinician education & awareness. 8. Publish clinically relevant research. 9. Fundraise for research, awareness, and educational projects. 10. Develop tools to improve diagnosis & management.

Ruling year info

2018

Co-Founder, Executive Director

Ms. Kimber Wakefield MacGibbon

Main address

10117 SE Sunnyside Rd Suite F8

Clackamas, OR 97015 USA

Show more contact info

EIN

71-0912435

NTEE code info

Alliance/Advocacy Organizations (G01)

Alliance/Advocacy Organizations (H01)

Nonmonetary Support N.E.C. (P19)

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

Due to lack of knowledge and research, hyperemesis gravidarum, HG, a pregnancy condition characterized by severe nausea and vomiting, leads to weight loss, dehydration and malnutrition. HG is one of the top 2 causes of hospitalization during pregnancy and results in a high fetal loss rates and numerous maternal complications including trauma, premature birth and pre-eclampsia, as well as risks of adverse effects on the child including neurodevelopmental delays, autism, behavioral and emotional disorders and sensory processing disorders. The cost of hospital and emergency care increases annually and exceeds $3 billion. With aggressive and proactive care using assessment and treatment resources HER has developed, downstream maternal and child effects can be reduced.

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?

USC HG Research

HER has been working with USC's Keck School of Medicine for over 10 years and has helped bring HG research participants into the program as well as fund over $60K in research. Through this research collaboration, over 35 medical journal articles have been published and clinical trials continue in the legacy of T. Murphy Goodwin, MD. Many are groundbreaking studies on topics including incidence of PTSD, psychosocial impact, termination rates, adverse child outcomes, and genetic causes lead by Dr. Marlena Fejzo.

Population(s) Served
Women and girls
Adults
Children and youth
Low-income people

Develop tools to improve diagnosis and treatment so women receive the care they need to survive their pregnancies without complications for mother and child. These tools to date include multilingual brochures, assessment tools, and the HG Care App.

Population(s) Served
Families
Women and girls

Development of policies and improved treatment protocols through collaboration with medical societies and health organizations.

Population(s) Served
People with diseases and illnesses
Women and girls

Where we work

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 unique website visitors

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

Education & Awareness & Advocacy

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of research studies conducted

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

USC HG Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Number of website sessions

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

Education & Awareness & Advocacy

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.

The HER Foundation’s mission is to advance hyperemesis gravidarum (HG) research and policy initiatives, and provide education and support to those seeking effective management strategies for hyperemesis gravidarum (HG). The HER Foundation is the voice of support and hope to all who are faced with managing HG. *HG is severe nausea and vomiting of pregnancy that can be life-threatening and cause dehydration, malnutrition and other complications for mother and child.

The HER Foundation partners with leading universities for research and app development and has a highly educated Board of Directors that guides its work. HER creates tools and resources to educate both families and health professionals, speaks and exhibits at obstetrical conferences, and engages with organizations to develop policies and resources that improve the care of women with HG around the world. HER also personally supports tens of thousands of families each year across the globe on social media platforms and direct support. Additionally HER volunteers offer personal support as well.

The HER Foundation partners with leading universities for research and app development and has a highly educated Board of Directors with expertise and HG experience that guides its work. All are professionals in a scientific, business or technology industry, and several have corporate or university affiliations that support the foundation in some way. With these universities, HER has helped identify the first genes associated with the cause of HG. HER also has several hundred volunteers across the globe that provide emotional support of families facing HG. HER has a staff of 2, plus its founders and Board Members that are actively involved. The Executive Director co-founded the organization and has been a director since the Foundation started as a website in 2000. She has been a registered nurse for over 30 years and survived 2 HG pregnancies. She has worked with Dr. Marlena Fejzo, a Harvard-trained geneticist and leading HG scientist, for 20 years on HG research. Dr. Aimee Brecht-Doscher, a board-certified OBGYN in Los Angeles, is one of HER's medical advisors and actively involved in developing resources and offering support. Several leadership, staff, volunteers, and Board Members have been working with the HER Foundation for 10+ years. This has built enormous expertise and consistency that gives HER an excellent reputation for credibility and makes HER the leading source for HG information and resources.

Since 2000, HER has helped reduce maternal morbidity and mortality, as well as fetal loss and adverse child outcomes through education, support, and innovative resources that improve maternal healthcare. HER has personally supported and consulted with many thousands of HG patients across the globe. In partnership with UCLA and USC, HER has conducted genetic studies identifying causes of HG, and published many studies on the impact and outcomes associated with HG.

Accomplishments:
- Termination rate decreased from 15% to 6% with support and resources.
- Over 40 published papers providing groundbreaking findings such as causes, impact and treatments.
- Education of health professionals at multiple obstetrical, health and genetics conferences.
- Over 2 million website visitors accessing innovative HG resources.
- Collaboration with HHS and Texas HHS on HG strategies; congressional briefing.
- Development and distribution of assessment and treatment tools for medical professionals.
- Launch of free HG Care app with UCLA mHealth.
- Documentary on HG to increase awareness started.

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, To understand people's needs and how we can help them achieve their goals

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

    We collect feedback from the people we serve at least annually, 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 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, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection

Financials

HYPEREMESIS EDUCATION & RESEARCH 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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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.

HYPEREMESIS EDUCATION & RESEARCH FOUNDATION

Board of directors
as of 09/10/2022
SOURCE: Self-reported by organization
Board co-chair

Kelly Ryerson

HER Foundation

Term: 2021 -


Board co-chair

Spencer Richards

HER Foundation

Term: 2021 -

Marlena Fejzo

USC/Materna

Aimee Brecht-Doscher

Ventura County Health

April Horsley

Germany

Kristina Kincaid

Booz Allen Hamilton

Patrick Mullin

USC

Linda Newgent

Optum Healthcare

Spencer Richards

Mayo Clinic

Amy Schumer

Actress

Margarita Valdez

American Society of Gene & Cell Therapy

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 8/10/2022

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
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

Equity strategies

Last updated: 08/10/2022

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.
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 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.