THE MARFAN FOUNDATION INC .

Know the signs. Fight for Victory.

aka The Marfan Foundation   |   Port Washington, NY   |  www.marfan.org

Mission

Save and improve lives, while creating communities, for all individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes.

Ruling year info

1982

President & CEO

Mr. Michael L. Weamer

Main address

22 Manhasset Ave

Port Washington, NY 11050 USA

Show more contact info

Formerly known as

National Marfan Foundation

EIN

52-1265361

NTEE code info

Alliance/Advocacy Organizations (G01)

Birth Defects (G20)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

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

Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos, Ehlers Danlos and other genetic aortic and vascular conditions affect an estimated 200,000 people in the U.S. These conditions impact several body systems and can be life-threatening if not diagnosed and treated. Additionally, these conditions are complex, chronic, and progressive, so – even if they are diagnosed and treated – they can impact quality of life. We work every day to provide information and support to the affected people and their families and raise awareness and educate the general public and the medical community. In addition, we have a comprehensive research program that supports grants and other research initiatives designed to improve diagnosis, identify new medical therapies, and improve surgeries for this patient population so that people with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos and other genetic aortic and vascular conditions can live a long, full life.

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?

Research Initiatives and Grants

The Marfan Foundation works tirelessly to advance research into treatments that save lives and dramatically enhance quality of life for people living with Marfan syndrome, Loeys-Dietz, Vascular Ehlers-Danlos (VEDS), and related genetic aortic and vascular conditions. Through our research grant program, the Foundation plays a critical role in advancing research and strengthening the community of scientists around the world committed to unlocking the mysteries of these conditions. The Foundation also convenes conferences, partnerships, and symposia in the US and abroad to facilitate the sharing of research findings to move the field forward more expeditiously. It also partners with government agencies and other healthcare organizations to advance its research goals and advocates for additional research funding from the government.

Population(s) Served
People with diseases and illnesses

The Marfan Foundation provides a wealth of medical and quality of life information for people living with Marfan syndrome, Loeys-Dietz, Vascular Ehlers-Danlos (VEDS), and related conditions through its Help & Resource Center, directed by an in-house nurse who answers questions by phone and email, and through its comprehensive website. Extensive information is available for individuals, families, and medical professionals, with specialized resources for children, teens, parents, teachers, and school nurses. Fact sheets are available in multiple languages. In addition, the Foundation is focused on mental health and providing a supportive welcoming community both in-person and online. These provide educational opportunities and the ability to meet people from your area who are on the same medical journey.

Population(s) Served
People with diseases and illnesses

The Marfan Foundation always has the latest and most accurate information about Marfan syndrome, Loeys-Dietz, Vascular Ehlers-Danlos (VEDS), and other genetic aortic and vascular conditions and reaches a worldwide audience. It provides expansive information for patients, family members, and healthcare providers through its website and helpline, accessible via phone and email, as well as webinars on medical topics, mental health issues, and quality of life. In addition, the Foundation creates public awareness campaigns about aortic disease and the risk of sudden death for people with Marfan syndrome and other related conditions and the importance of early diagnosis. The Foundation offers an increasing number of resources and educational opportunities in multiple languages to better serve the international community of affected patients and families and to reach diverse underserved communities.

Population(s) Served
People with diseases and illnesses

Where we work

Accreditations

Better Business Bureau Wise Giving Alliance 2017

Charity Navigator 4 Star Rating 2017

Better Business Bureau Wise Giving Alliance 2018

Better Business Bureau Wise Giving Alliance 2019

Better Business Bureau Wise Giving Alliance 2020

Charity Navigator 4 Star Rating 2018

Charity Navigator 4 Star Rating 2019

Better Business Bureau Wise Giving Alliance 2021

Charity Navigator 4 Star Rating 2020

Charity Navigator 4 Star Rating 2021

Better Business Bureau Wise Giving Alliance 2022

Charity Navigator 4 Star Rating 2022

Awards

Best Nonprofit to Work 2018

NonProfit Times

Best Nonprofit to Work - Top 50 2019

NonProfit Times

Best Nonprofit to Work - Top 50 2020

NonProfit Times

Affiliations & memberships

National Health Council 2017

National Health Council 2018

National Health Council 2019

National Health Council 2020

National Health Council 2021

National Health Council 2022

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 groups/individuals benefiting from tools/resources/education materials provided

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

Education and Public Awareness

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Total dollar amount of grants awarded

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

Research Initiatives and Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of accolades/recognition received from third-party organizations

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Increasing

Context Notes

The Marfan Foundation has earned: - 4 Star Charity per Charity Navigator, - Accredited Charity by BBB, - Guidestar Platinum Status

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

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

We will not rest until we've achieved victory—a world in which everyone with Marfan syndrome, Loeys-Dietz Vascular Ehlers Danlos, Ehlers Danlos or related conditions receives a proper diagnosis, gets the necessary treatment, and lives a long and full life.

We continue to expand our programs and services so that we are preeminent provider of resources and support for people with genetic aortic and vascular conditions worldwide. Our strategies include reaching diverse communities, both within the US and globally, with content for healthcare professionals (including new management guidelines) and patients and families (in English and other languages). In addition to our medical content, we are creating more resources to address mental health and quality of life. To achieve this, we are increasing the capacity of our Help & Resource Center and creating more partnerships around the world that will expand our impact. And we have a mental health task force in place to help prioritize offering and create content.
The myriad opportunities for support that we provide complement our resources for the community. We create a sense of community for people who otherwise feel isolated and alone. We do this through our in-person annual conference, regional symposia, and Walks for Victory, and through our virtual support groups, online chats, webinars, and virtual symposia, including one in Spanish. We have a targeted program for the youngest members of our community, including Camp Victory, Teen Chat, Teen Game Night, and Kids Club. Our focus is on expanding these opportunities for connection to previously underserved groups and geographic areas we have not reach before, both in the US and abroad. Our health equity task force is being created to better serve diverse communities.`
Our research program is an ongoing priority and we collaborate with researchers and organizations worldwide to identify new therapies and treatment. We increased our research grant program to have a greater impact on critical scientific discovery that will result in the best possible outcomes for individuals affected by Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. In addition to driving the research forward, our research program creates a pipeline of talented promising and senior investigators who have a commitment to achieve better outcomes for the patients we serve. Our international meetings have led to better connections with scientists in other countries, leading to more collaborations.
Our awareness efforts are focused on an expanded social media presence for all of our divisions. By sharing stories, highlighting community members, and creating comprehensive campaigns for Marfan Awareness Month, Loeys-Dietz Awareness Month, VEDS Action Month, and Aortic Disease Awareness Week we have a significant impact on awareness for all of our conditions.

The Foundation has an accomplished staff that is uniquely qualified and passionate about implementing the mission. Our Board of Directors, which consists of industry leaders – nearly all with a family member with Marfan syndrome, Loeys Dietz, Vascular Ehlers Danlos or a related condition-- provides strategic direction. Our Professional Advisory Board, which consists of the world's leading doctors and scientists on Marfan syndrome and related conditions provides oversight on medical information and direction for research. Our Scientific Advisory Board, which is comprised of a variety of researchers, institutes a rigorous NIH-type review of the grants we receive for our research grants. And, we now include the GenTAC Alliance, a world class community of physicians and scientists committed to advancing our understanding of genetically induced thoracic aortic diseases and their treatment.

Before our founding in 1981, Marfan syndrome was largely unknown or misunderstood, but our tireless efforts have led to many life-changing advances in our fight for victory over Marfan syndrome, Loeys Dietz, Vascular Ehlers-Danlos and other genetic aortic conditions. For years, families were in the dark about causes and treatments, but we've fought tirelessly to answer their questions.

Today, we are the primary source for up-to-date and trustworthy information. We push research forward quickly, thanks to the strong and strategic relationships we've built with prominent researchers, the National Institutes of Health and other governmental agencies, and the medical community at large.

Life with Marfan syndrome and other genetic aortic conditions was once all too isolating, but since our founding we've built a welcoming community that offers a place to turn, get clear and up-to-date information and find support. The research we have championed has identified new conditions related to Marfan syndrome, which not only allows for better, more specific diagnoses, but also helps to pinpoint more effective treatments for both Marfan syndrome and the related conditions.

We have turned the tide for research, causing dramatic growth in the number of researchers studying Marfan syndrome, Loeys-Dietz, Vascular Ehlers-Danlos and other related conditions. The resulting research findings have improved diagnosis and treatment for the different body systems affected by these conditions.

We provide expansive information for patients, family members, and healthcare providers through our website, webinars, support groups and our Help & Resource Center, accessible via phone and email. We create public awareness campaigns about the risk of sudden death for people with Marfan syndrome and the importance of early diagnosis and we offer an array of programs and services to help people with Marfan and, most recently, we expanded our offerings to those with VEDS, one of the related conditions. We will continue to advance all areas of our mission until everyone with Marfan and related conditions is diagnosed and can live a long and fulfilled live.

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.
  • Who are the people you serve with your mission?

    We provide education, information, and support to an international community of people living with Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos syndrome (VEDS), and related genetic aortic and vascular conditions. We also serve their family members by offering support and information. In addition, we serve medical professionals and allied healthcare workers with information about the diagnosis and treatment of the conditions we address. Finally, we serve researchers in the field through our research grant program and other research support

  • 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), Case management notes, 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 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,

  • What significant change resulted from feedback?

    Our programs and services are driven by the needs of our community. One example is how we created the program for our first Virtual Annual Conference. Our Volunteer Leadership Committee, comprised of community members from around the country, played an active role in nearly every aspect of the conference. Many had been to our previous in-person events; others had not. They took community feedback from our 2020 International Summit and combined it with elements from our previous in-person events to help determine the mix of medical presentations and social opportunities; the desired medical presentations; the format that would create the best engagement; and the time and length of the conference. The result was a valuable mix of educational and social opportunities that met their needs.

  • With whom is the organization sharing feedback?

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

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

    Asking for feedback and input has resulted in our community getting more engaged with our organization. They truly feel that The Marfan Foundation is their organization. The staff-volunteer partnership contributes tremendously to the strength of the organization and, together, we can serve an even greater community. The increased affinity has been an important factor in even more community members working with us to advance our mission.

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

    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 people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

THE MARFAN FOUNDATION INC .
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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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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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THE MARFAN FOUNDATION INC .

Board of directors
as of 11/02/2022
SOURCE: Self-reported by organization
Board chair

Cory Eaves

General Atlantic

Caryn Kauffman, CPA

Karen Murray

Scott Avitabile

Alexandra McLean Jennings

Gary Kauffman

Alan Braverman, MD

Patricia Estrada

Jeffrey LeSage, CPA

SInclair Li

Bert Medina

Jon Tullis

Heather Bergstrom

Jerry Lerman

David Warren

Anthony Yasick

Ray Chevallier

Juan Bowen, MD

James Prutow

Dawn Reiner

Andrew Toy

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 11/2/2022

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
Male, 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: 10/20/2021

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 ask team members to identify racial disparities in their programs and / or portfolios.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • 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 have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • 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 measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • 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.