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CHARITY REVIEW
Issued: January 2024 Expires: January 2026

Marfan Foundation

Accredited Charity
Accredited Charity

Meets Standards
Accreditation seal
(800) 862-7326
22 Manhasset Avenue
Port Washington, NY, 11050
https://marfan.org/
📄 Full Report 🖨️ Print 📋 BBB Charity Standards

Standards For Charity Accountability

Governance

  1. Board Oversight
  2. Board Size
  3. Board Meetings
  4. Board Compensation
  5. Conflict of Interest

Measuring Effectiveness

  1. Effectiveness Policy
  2. Effectiveness Report

Finances

  1. Program Expenses
  2. Fundraising Expenses
  3. Accumulating Funds
  4. Audit Report
  5. Detailed Expense Breakdown
  6. Accurate Expense Reporting
  7. Budget Plan

Fundraising & Info

  1. Truthful Materials
  2. Annual Report
  3. Website Disclosures
  4. Donor Privacy
  5. Cause Marketing Disclosures
  6. Complaints

Marfan Foundation meets the 20 Standards for Charity Accountability.

Stated Purpose:
"to 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."

Year, State Incorporated:
1981, MD

The Marfan Foundation reports that it works to advance research for treatments that aim to save lives and improve the quality of life for individuals living with Marfan syndrome, Vascular Ehlers Danlos, Loeys-Dietz, and other genetic aortic conditions. The organization's research grant program provides funds to researchers and scientists specializing in diverse medical fields. The Marfan Foundation also shares information regarding Marfan syndrome and related conditions through webinars, conferences, and partnerships with governmental agencies and other health organizations. Finally, the organization states that it offers a community for those affected by Marfan syndrome through its mentor program, symposiums and educational support through its website.

For the year ended June 30, 2022, Marfan Foundation's program expenses were:

Research initiatives and grants: $1,582,843

Education and public awareness: $947,083

Patient services and annual conference: $1,183,961

Total Program Expenses: $3,713,887

Chief Executive
Michael L. Weamer, President and Chief Executive Officer

Compensation*
$423,870

Chair of the Board
Bert Medina

Chair's Profession / Business Affiliation
President and Chief Executive Officer, WPLG, Inc.

Board Size
22

Paid Staff Size
26

*2021 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.

Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Direct mail appeals, Radio

Fundraising costs were 7% of related contributions. (Related contributions, which totaled $9,706,410, are donations received as a result of fundraising activities.)

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.

The following information is based on Marfan Foundation's audited financial statements for the year ended June 30, 2022.

Source of Funds
Major contributions $5,627,608
Other contributions $528,018
Direct response $328,239
Government grant revenue $491,000
Community events $241,401
Conferences and symposia $13,464
Investment income, net $-419,545
Special events, net $2,379,786
In-kind contributions $110,358
Total Income $9,300,329

Programs: 77% Fundraising: 14% Administrative: 9%

Total Income $9,300,329
Total expenses: $4,805,145
  Program expenses $3,713,887
  Fundraising expenses $669,533
  Administrative expenses $421,725
  Other expenses $0
Income in Excess of Expenses $4,495,184
Beginning Net Assets $10,791,051
Other Changes In Net Assets $-194,087
Ending Net Assets $15,092,148
Total Liabilities $1,508,775
Total Assets $16,600,923

Note 1: As noted in the financial section above, "other changes in net assets" refers to change in value of beneficial interest in charitable remainder trust.

Note 2: According to the organization's audited financial statements for the year ended June 30, 2022, the Marfan Foundation received in-kind gifts totaling $110,358 in the form of legal services ($93,000) and website and TV advertisements ($17,000).

An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the International Association of Better Business Bureaus.

This report is not to be used for fundraising or promotional purposes.

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Report completed by:
BBB Wise Giving Alliance