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THE MARFAN FOUNDATION INC
PORT WASHINGTON, NY · EIN 521265361 · Form 990 · FY2024 · Medium ($1M-$10M) · marfan.org
revenue
$7.8M
expenses
$7.6M
net assets
$16.9M
employees
30
volunteers
510
program ratio
83%
profile · synthesized from sources

The Marfan Foundation provides education, support, and resources for individuals and families affected by Marfan syndrome, Loeys-Dietz syndrome, vascular Ehlers-Danlos (VEDS), and other genetic aortic and vascular conditions. It connects patients to expert medical institutions, offers a helpline staffed by nurses, and delivers webinars, support groups, and mental health resources. The organization serves a global community with multilingual materials and virtual programming accessible across time zones.

irs program accomplishments · form 990 part iii · fy2024

What they reported doing

  1. #1 primary $2.09M
    SEE SCHEDULE O.SUPPORT -EXPENSES $2,092,564, GRANTS $12,297, REVENUE $32,885THE MARFAN FOUNDATION OFFERS CUTTING-EDGE FACT-BASED INFORMATION ABOUT MARFAN, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS (VEDS), AND OTHER GENETIC AORTIC AND VASCULAR CONDITIONS. WE REACH A WORLDWIDE AUDIENCE DIGITALLY AND THROUGH IN-PERSON PROGRAMMING. THROUGH OUR INSTITUTIONAL DIRECTORY, THE MARFAN FOUNDATION CONNECTS THOUSANDS OF INDIVIDUALS AND FAMILIES TO MORE THAN 70 U.S. - AND A GROWING NUMBER OF GLOBAL - INSTITUTIONS OFFERING EXPERTISE IN MARFAN, LDS, VEDS, AND RELATED GENETIC AORTIC AND VASCULAR CONDITIONS. WE PROVIDE EXPANSIVE INFORMATION FOR PATIENTS, FAMILY MEMBERS, AND HEALTHCARE PROVIDERS THROUGH OUR WEBSITE AND HELPLINE, ACCESSIBLE VIA PHONE AND EMAIL, 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 LANGUAGE AND OTHER LANGUAGES TO BETTER SERVE PEOPLE LIVING WITH GENETIC AORTIC CONDITIONS AND THEIR SUPPORT NETWORKS. THE FOUNDATION IS FOCUSED ON ENSURING EVERYONE HAS ACCESS TO QUALITY CARE AND FOSTERING BELONGING FOR ALL.
  2. #2 $1.38M
    SEE SCHEDULE O.EDUCATION - EXPENSES $1,380,263, GRANTS $4,647, REVENUE $1,505THE MARFAN FOUNDATION AND ITS DIVISIONS (THE LOEYS-DIETZ SYNDROME FOUNDATION, THE VEDS MOVEMENT, AND THE GENETIC AORTIC NETWORK) ARE THE PREEMINENT PROVIDERS OF INFORMATION AND PROGRAMS FOR PEOPLE LIVING WITH GENETIC AORTIC AND VASCULAR CONDITIONS, THEIR LOVED ONES, MEDICAL PROFESSIONALS, RESEARCHERS, AND THE GENERAL PUBLIC. WE REACH ONE MILLION PEOPLE ANNUALLY WITH OUR EDUCATIONAL RESOURCES, AND MORE THAN 7 MILLION IN THE SOCIAL MEDIA SPACE ALONE. THE MARFAN FOUNDATION OFFERS A WEALTH OF MEDICAL AND QUALITY-OF-LIFE INFORMATION IN MANY LANGUAGES THROUGH ITS HELP & RESOURCE CENTER, WHICH REACHES 5,000 PEOPLE EVERY YEAR -- DIRECTED BY IN-HOUSE NURSES AND A BILINGUAL MANAGER WHO ANSWER QUESTIONS BY PHONE AND EMAIL, AND THROUGH ITS COMPREHENSIVE WEBSITE, WHICH IS AVAILABLE IN MORE THAN 25 LANGUAGES. THE FOUNDATION OFFERS SPECIALIZED RESOURCES FOR CHILDREN, TEENS, PARENTS, TEACHERS, AND SCHOOL NURSES. IN ADDITION, THE FOUNDATION IS FOCUSED ON MENTAL HEALTH, OFFERING A RANGE OF OPPORTUNITIES, INCLUDING VIRTUAL SUPPORT GROUPS, VIDEOS, WEBINARS, AND OTHER CONTENT. THE MARFAN FOUNDATION FOCUSES ON EXPANDING HEALTH EQUITY AND ACCESS TO CARE FOR THE CONSTITUENTS WE SERVE GLOBALLY.
named programs · 6 · from sources

What they call their work

Annual Conference and Regional Symposia
In-person and virtual gatherings for education, networking, and community-building for affected individuals and families
Camping Program
Provides children affected by genetic aortic conditions opportunities for a normal summer camp experience
Help & Resource Center
Phone and email helpline staffed by in-house nurses and a bilingual manager providing medical and quality-of-life information to patients, families, and healthcare providers
Institutional Directory
Connects individuals and families to over 70 U.S. and growing global institutions with expertise in Marfan, Loeys-Dietz, VEDS, and related genetic aortic and vascular conditions
Virtual Support Groups and Webinars
Offers virtual support groups, teen chats, and webinars on medical topics, mental health, and quality of life in multiple languages and across time zones
Volunteers for Victory Program
Engages affected individuals in volunteer opportunities to advance the foundation's mission
activities · 9 groups

What they do

  • Rare Genetic Disease Research and Advocacy 5 activities
    • Advancing health equity and access to care
      Implements programs aimed at expanding health equity and improving access to care for individuals with genetic aortic and vascular conditions on a global scale.
    • Conducting research on genetic aortic and vascular conditions
      Empowers individuals and supports healthcare providers through research on Marfan syndrome, Loeys-Dietz, Vascular Ehlers-Danlos, and related genetic aortic and vascular conditions to improve quality of life and longevity.
    • Connecting patients to specialized care centers
      Links individuals and families to over 70 U.S. and global institutions with expertise in diagnosing and treating genetic aortic and vascular conditions.
    • Distributing educational materials for patients and providers
      Creates and provides easy-to-understand educational resources about Marfan syndrome and related conditions for patients, families, and healthcare providers.
    • Organizing national awareness and fundraising events
      Coordinates events across the United States and online to raise public awareness and funds for genetic aortic and vascular conditions, including patient education and community engagement components.
  • Charity Golf Tournament Fundraiser 1 activity
    • Enabling community fundraising and volunteer engagement
      Runs a Community Fundraising program and recruits volunteers for campaigns, event setup, outreach, social media advocacy, and content sharing to expand public awareness and support.
  • Peer-Led Mental Health Support Groups 1 activity
    • Facilitating virtual support groups and community events
      Hosts regular virtual support groups via Zoom, including specialized events like Teen Talk and Kids Club, to address specific concerns and build community among individuals and families affected by genetic aortic and vascular conditions.
  • University-Specific Endowment and Program Funding 1 activity
    • Funding educational resource development through grants
      Finances the creation of educational materials and resources through grant funding from external foundations such as the Chu and Chan Foundation.
  • Patient and Researcher Conferences 1 activity
    • Hosting annual and regional educational events
      Organizes an annual conference and full-day regional symposiums across the U.S. to provide medical education and foster community connection for individuals affected by Marfan, Loeys-Dietz, VEDS, and related conditions.
  • 24/7 Crisis and Warmline Support Services 1 activity
    • Operating a nurse-staffed helpline for patients and providers
      Provides medical and psychosocial information through a bilingual phone and email helpline, reaching approximately 5,000 people annually, supported by website content and educational webinars.
  • Recreational and Emotional Support Programs for Children with Serious Illnesses 1 activity
    • Operating family and children’s camping programs
      Provides safe, structured camping experiences for children and families affected by Marfan syndrome, Loeys-Dietz, VEDS, and related conditions to support typical summer experiences in a medically aware environment.
  • Disease-Specific Clinical & Patient Education 1 activity
    • Providing mental health and coping resources
      Offers educational resources on the benefits of therapy and how it can help individuals manage chronic pain and emotional challenges associated with Marfan syndrome.
  • Familial Support for Rare Genetic Conditions 1 activity
    • Supporting teen transition to adult care
      Provides education and support programs specifically designed to help teens affected by genetic aortic and vascular conditions transition from pediatric to adult healthcare systems.
financials · form 990 · fy2024
revenue
Total revenue$7.78M
Contributions & grants$6.90M89%
Program service revenue$34K0%
Investment income$842K11%
Other revenue$0
expenses
Total expenses$7.57M
Program expenses83%
Admin / overhead6%
Fundraising11%
Salaries & benefits$4.26M
Grants paid out$1.53M
Largest expense lineCompensation
balance sheet
Total assets$19.55M
Cash$2.76M
Investments$12.74M
Liabilities$2.67M
Net assets$16.88M
Liquid reserves24.6 mo
5 years on record · 2020–2024 · YoY revenue +41.8%
leadership · form 990 part vii · fy2024

Who runs it

paid leadership · 8
NameTitleHours/wkCompensation
MICHAEL L WEAMER PRES/CEO 35 $503K
HELAINE BARUCH CHIEF DEVELOPMENT OFFICER 35 $268K
JOSEPHINE GRIMA CHIEF SCIENCE OFFICER 35 $228K
EILEEN NOVINS CHIEF PROGRAM OFFICER 35 $213K
INDERJEET KAUR CPA CHIEF FINANCIAL OFFICER 35 $186K
JUDITH GIBALDI CHIEF OPERATIONS OFFICER 35 $153K
KIMBERLY K HUDDLESTON VP. OF DEVELOPMENT 35 $138K
LAUREN E MAY DIRECTOR OF RESEARCH 35 $132K
board members · 17
  • ALAN BRAVERMAN MD — DIRECTOR
  • ANDREW TOY — DIRECTOR
  • ANTHONY YASICK MD — DIRECTOR
  • BERT MEDINA — CHAIR
  • BRANDY BANKS HOTCHKISS — DIRECTOR
  • BRYAN MAHER — DIRECTOR
  • CARYN E KAUFFMAN CPA — TREASURER
  • CORY A EAVES — IMMEDIATE PAST CHAIR
  • DAVID WARREN — DIRECTOR
  • DAWN REINER — DIRECTOR
  • DUKE CAMERON MD — DIRECTOR
  • GARY KAUFFMAN — DIRECTOR
  • GIL BASHE — DIRECTOR
  • JAMES PRUTOW — DIRECTOR
  • JEFFREY C LESAGE — DIRECTOR
  • JERRY L LERMAN — DIRECTOR
  • JESS MILBURN — DIRECTOR
relationships · 21

Who they work with

  • Chu and Chan Foundation Funder — Provided an education grant to support website development.
  • Community Awareness Team Partner — Volunteer team that organizes local events to raise awareness about the Foundation.
  • Facebook Network — Platform used for community engagement and outreach
  • Instagram Network — Platform used for community engagement and outreach
  • James Madison University Partner — Student with Marfan Syndrome attends university, indicating institutional engagement and support.
  • LinkedIn Network — Platform used for professional engagement and outreach
  • Loeys-Dietz Network — Organization focused on supporting individuals with Loeys-Dietz syndrome as part of its mission.
  • Marfan Connect 50+ Support Group Network — Virtual support group offered by The Marfan Foundation for individuals aged 50 and over living with Marfan syndrome.
  • Our active volunteer network Partner — Volunteer network that organizes family support and raises awareness and funds in local communities nationwide.
  • Social Media Awareness Team Partner — Volunteer team that uses personal social media platforms to share Foundation announcements and graphics.
  • The Genetic Aortic Network Partner — Division of The Marfan Foundation focused on genetic aortic conditions.
  • The Loey-Dietz Syndrome Foundation Partner — Division of The Marfan Foundation providing specialized information and programs for Loey-Dietz syndrome.
  • The VEDS Movement Partner — Division of The Marfan Foundation providing specialized information and programs for vascular Ehlers-Danlos syndrome.
  • Threads Network — Platform used for community engagement and outreach
  • TikTok Network — Platform used for awareness and youth engagement
  • VEDS Network — Collaborates with VEDS as part of its work on genetic aortic and vascular conditions.
  • VEDS Movement Partner — Collaborates with the VEDS Movement on community events such as the Annual Houston VEDS Party & Walk for Victory.
  • Vascular Ehlers-Danlos syndromes Network — Organization addresses Vascular Ehlers-Danlos syndromes as part of its condition-specific support network.
  • Writing Team Partner — Volunteer team that contributes personal stories and written content for Foundation communications.
  • X (Twitter) Network — Platform used for public communication and awareness
  • YouTube Network — Platform used for educational and storytelling content
strategies · 4

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Integrated Support Model
    methodology: integrated_support_model
    By integrating research, education, support, and community building as interconnected components, the organization improves health outcomes and quality of life for individuals with genetic aortic and vascular conditions, because a holistic approach addresses both medical and psychosocial needs simultaneously.
  • Lived Experience-Informed Care
    methodology: lived-experience-informed-care
    By incorporating insights from individuals with lived experience into program design and healthcare practices, the organization improves the relevance and effectiveness of support and clinical approaches, because patient-centered innovation leads to better adherence and outcomes.
  • Patient Empowerment Through Self-Advocacy
    methodology: patient_self_advocacy
    By equipping individuals with knowledge, confidence, and communication skills, the organization enables them to advocate effectively for their own care, because empowered patients achieve better engagement with healthcare systems and improved health outcomes.
  • Peer and Community-Based Support
    methodology: peer_support_networking
    By creating in-person and virtual spaces for peer connection and community engagement, the organization fosters mutual support and shared learning among individuals with similar medical experiences, because lived-experience networks enhance emotional resilience and health self-management.