Programs and results
What we aim to solve
Our programs
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.
Where we work
Affiliations & memberships
National Organization of Rare Disorders (NORD) 2018
External reviews
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Videos
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees,
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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,
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With whom is the organization sharing feedback?
The people we serve, Our staff, Our board, Our funders,
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Which of the following feedback practices does your organization routinely carry out?
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What challenges does the organization face when collecting feedback?
It is difficult to find the ongoing funding to support feedback collection,
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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Connect with nonprofit leaders
SubscribeBuild 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 directorsas of 9/8/2021
Amy De Simone
AFE Foundation
Term: 2010 -
Mrs. Michelle Moon
Tobin Center for the Performing Arts
Term: 2014 - 2017
David Di Pietro
Leidos
Patricia McGlinchey
The Advisory Board Company
Paige Najvar
U.S. Dept of Fish and Wildlife Service
Linda Ross
CardioDx
Gary Dildy
Baylor College of Medicine at
Stephanie Arnold
Endemol
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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
No data
Gender identity
No data
No data
Sexual orientation
No data
Disability
No data