GOLD2023

AFE FOUNDATION

#endAFE

Vista, CA   |  www.afesupport.org

Mission

Reducing maternal and infant mortality attributed to amniotic fluid embolism while helping those impacted navigate paths forward.

Ruling year info

2012

Executive Director

Mrs. Miranda Klassen

Main address

1611 S Melrose Drive Suite A #152

Vista, CA 92081 USA

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EIN

26-4207421

NTEE code info

Specifically Named Diseases (G80)

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?

Amniotic Fluid Embolism Registry at Baylor College of Medicine

One of the primary goals of the AFE Foundation is to spur clinical research on amniotic fluid embolism (AFE).

The AFE Foundation has joined into a formal collaboration with Baylor College of Medicine in Houston, Texas, Wayne State University in Detroit Michigan, and the Perinatology Research Branch of the National Institute of Health (NIH) to form an international registry and biorepository of cases of amniotic fluid embolism. This registry allows for greater visibility into incidence rates, survival rates, and commonalities amongst those affected.

Population(s) Served
Women and girls

Where we work

Awards

Top Non Profit 2020

Great NonProfits

Affiliations & memberships

National Organization of Rare Disorders (NORD) 2018

MoMMA's Voices 2018

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 AFE foundation exists to better understand AFE and identify it’s cause so that clinicians will be able to predict, prevent, and thereby reduce lives lost and collateral harm done to mothers, babies, families and communities.

Our strategy is to advance research, promote education, elevate awareness, and provide support for those impacted. We are frequently asked to speak, participate as a panelist, and lecture on amniotic fluid embolism and patient advocacy.

We are an international network of those affected by AFE, advised by a world-renowned medical advisory board comprising respected physicians, nurses, and expert researchers. The AFE Foundation also collaborates with other non-profit organizations, governmental agencies, prestigious academic institutions, and corporate partners to help carry out our mission and vision.

We have an expert community willing to participate in research and education. The Executive Director of the AFE Foundation serves on boards of various maternal health organizations. She is the Patient Advocate for the Council for Patient Safety in Women’s Health Care based in Washington D.C., Executive Committee Member for the California Maternal Quality Care Collaborative (CMQCC), Pregnancy Associated Maternal Mortality Review Committee (PAMR) Executive Advisory Member for the Institute for Perinatal Quality Improvement, and as a member of the expert panel for the Obstetric Life Support Pregnancy Resuscitation Program at Baylor College of Medicine. We are seen as the experts of AFE and revered as the primary resource for information as it pertains to AFE.

We have accomplished a great deal since 2008. Our research registry has garnered an international following and collaboration. We have published more than a dozen papers on AFE treatment and management, diagnostic criteria, subsequent pregnancies, risk factors, and how to support patients, family, and staff after a severe maternal event.

We have provided direct education to over 10,000 clinicians across the globe through lectures and panels at Grand Rounds, webinars, and medical society meetings.

More than 1,500 families are engaged in our organization and participate in various support groups, peer outreach programs, and advocacy training opportunities.

Our impact would not be possible without the generosity and engagement of our supporters. While we have much to be proud of, we know there is still a great deal of work to be done. AFE remains unpreventable and poorly understood. Mothers and their babies are still dying. We envision a world free from the devastation of AFE when all moms can experience motherhood.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, 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?

  • What challenges does the organization face when collecting feedback?

    It is difficult to find the ongoing funding to support feedback collection

Financials

AFE 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

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.

AFE FOUNDATION

Board of directors
as of 01/13/2023
SOURCE: Self-reported by organization
Board co-chair

Amy De Simone

AFE Foundation

Term: 2022 - 2024


Board co-chair

Mrs. Michelle Moon

Visit San Antonio

Term: 2022 - 2024

David Di Pietro

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Crystal Matthews

Unified Health Care

Naomi Ventour

Google

Irene A Stafford

University of Texas Health Sciences Center

Stephanie Arnold

Endemol

Diana Masulli

LCSW

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 ? No
  • 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 7/20/2022

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, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability