PLATINUM2023

THE MARFAN FOUNDATION INC .

Know the signs. Fight for Victory.

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

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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

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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 advances life-saving, life-enhancing research for people living with Marfan syndrome, Loey-Dietz syndrome, VEDS and related conditions. Founded 41 years ago, our research program has funded 170 grants since 1986. In FY22 alone, we funded 20 grants totaling $1.285M. Research has fostered longevity by reducing life-threatening problems and identifying new treatments.

We convene researchers and deepen connections with research institutions to foster collaboration among scientists around the globe, including through in-person symposia that expedite progress. Our two-year and four-year grants mechanisms help ensure a pipeline of fellows, new investigators, and faculty members committed to understanding of rare diseases. We partner with government agencies and other healthcare organizations to advocate for additional research funding from the government.

Population(s) Served
People with diseases and illnesses

We are the top information source for affected individuals and families impacted by genetic aortic and vascular conditions, medical professionals, researchers, and the general public, reaching 1 million people every year. As of 2022, 78% of every dollar raised by the Foundation was directed to our mission, with 45% dedicated to patient services and public information. We connect thousands of individuals and families to the 70 institutions that offer experience and expertise in Marfan, LDS, VEDS and related conditions.

Our Help & Resource Center reaches 5,000 people annually -- directed by an in-house nurse. Across offerings, including our website, we provide information to individuals, families, and medical professionals, with specialized resources for children, teens, parents, teachers, and school nurses. We offer virtual support groups, videos, webinars, and other content around mental and physical wellbeing. We are committed to global health equity and multi-lingual offerings.

Population(s) Served
People with diseases and illnesses

We reach a worldwide audience digitally and through in-person programming with the latest scientific information. We connect thousands of individuals and families to the 70 institutions around the country that offer experience and expertise in Marfan, LDS, VEDS, and related conditions. We provide expansive information for patients, family members, and healthcare providers through our website and helpline, accessible via phone and email and serving 5,000 people annually as of 2022, as well as webinars on medical topics, mental health issues, support groups and quality of life. Programs are scheduled at various times to increase access across time zones (US and abroad). An increasing number of resources and educational opportunities are offered in Spanish and other languages to better serve affected patients and families. The Foundation is focused on reaching more people in traditionally underserved communities, increasing health equity and fostering additional access to care.

Population(s) Served
People with diseases and illnesses

Where we work

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

National Health Council 2023

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.
  • 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 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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lock

Connect with nonprofit leaders

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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.

THE MARFAN FOUNDATION INC .

Board of directors
as of 10/03/2023
SOURCE: Self-reported by organization
Board chair

Bert Medina

WPLJ

Caryn Kauffman, CPA

Scott Avitabile

Gary Kauffman

Alan Braverman, MD

Patricia McCabe Estrada

Jeffrey C. LeSage, CPA

SInclair Li

Bert Medina

Jon Tullis

Heather Bergstrom

Jerry L. Lerman

David R. Warren

Anthony J. Yasick

Ray Chevallier

Juan Bowen, MD

James Prutow

Dawn Reiner

Gil Bashe

Joaquin Ramos

Heather Hotchkiss

Cory Eaves

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 10/3/2023

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

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

No data

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.