The Marfan Foundation Inc
- Assets
- $16.6m
- Revenue
- $9.8m
- Investments
- $185.3k
- Employees
- 31
- Location
- Port Washington, NY
- Founding
- 11/1982
- Data as of
- 06/2022
- EIN
- 52-1265361
Organization Overview
The Marfan Foundation Inc is located in Port Washington, NY. The organization was established in 1982. According to its NTEE Classification (G80) the organization is classified as: Specifically Named Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 06/2022, Marfan Foundation Inc employed 31 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Marfan Foundation Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 06/2022, Marfan Foundation Inc generated $9.8m in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 15.8% each year . All expenses for the organization totaled $4.7m during the year ending 06/2022. While expenses have increased by 0.2% per year over the past 7 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, Marfan Foundation Inc has awarded 110 individual grants totaling $7,555,578. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
THE MARFAN FOUNDATION SAVE LIVES AND IMPROVES THE QUALITY OF LIFE OF INDIVIDUALS WITH GENETIC AORTIC AND VASCULAR CONDITIONS INCLUDING MARFAN, LOEYS-DIETZ, AND VASCULAR EHLERS-DANLOS SYNDROMES. WE PURSUE THE MOST INNOVATIVE RESEARCH AND MAKE SURE THAT IT RECEIVES PROPER FUNDING. WE CREATE AN INFORMED PUBLIC AND EDUCATED PATIENT COMMUNITY TO INCREASE EARLY DIAGNOSIS AND ENSURE LIFE-SAVING TREATMENT. WE PROVIDE RELENTLESS SUPPORT TO FAMILIES, CAREGIVERS, AND HEALTHCARE PROVIDERS.
Describe the Organization's Program Activity:
Part 3 - Line 4a
RESEARCH - 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 OTHER GENETIC AORTIC AND VASCULAR CONDITIONS. THROUGH ITS 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.
SUPPORT -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 TO INFORM OUR WORLDWIDE COMMUNITY AND INITIATIVES ARE UNDERWAY TO REACH DIVERSE COMMUNITIES IN THE US AND ABROAD. IN ADDITION, THE FOUNDATION IS FOCUSED ON MENTAL HEALTH AND OFFERS AN EXPANDING LIBRARY OF RESOURCES IN THIS AREA FOR AFFECTED PEOPLE AND THEIR FAMILIES. THE FOUNDATION PROVIDES A SUPPORTIVE WELCOMING COMMUNITY BOTH IN-PERSON AND ONLINE THROUGH AN ANNUAL CONFERENCE, REGIONAL SYMPOSIUMS, VIRTUAL SUPPORT GROUPS, TEEN CHATS, AND MORE. THESE PROVIDE EDUCATIONAL OPPORTUNITIES AND THE ABILITY TO MEET PEOPLE FROM YOUR AREA WHO ARE ON THE SAME MEDICAL JOURNEY. THE FOUNDATION'S GROWING CAMPING PROGRAM GIVES AFFECTED CHILDREN AN OPPORTUNITY TO HAVE A NORMAL SUMMER EXPERIENCE. THE FOUNDATION'S VOLUNTEERS FOR VICTORY PROGRAM OFFERS OPPORTUNITIES FOR AFFECTED PEOPLE TO CONNECT WHILE HELPING TO ADVANCE THE FOUNDATION'S MISSION.
EDUCATION - 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.
Get More from Intellispect for FreeCreate a free account to get more data, nonprofit salaries, advanced search and more.
Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Michael L Weamer President/ceo | Officer | 35 | $398,717 |
Helaine Baruch Chief Development Officer | 35 | $227,120 | |
Josephine Grima Chief Science Officer | 35 | $183,832 | |
Eileen J Masciale Chief Program Officer | 35 | $166,112 | |
Judith Gibaldi Chief Operating Officer | Officer | 35 | $163,336 |
Inderjeet Kaur CPA Chief Financial Officer | Officer | 35 | $119,857 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $2,379,786 |
| Related organizations | $0 |
| Government grants | $491,000 |
| All other contributions, gifts, grants, and similar amounts not included above | $6,725,266 |
| Noncash contributions included in lines 1a–1f | $100,503 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $9,596,052 |
| Total Program Service Revenue | $13,464 |
| Investment income | $205,040 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $72 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $9,814,628 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $447,022 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $202,300 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $707,114 |
| Compensation of current officers, directors, key employees. | $132,904 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $1,886,989 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $221,579 |
| Payroll taxes | $173,317 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $36,320 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $10,484 |
| Fees for services: Other | $186,554 |
| Advertising and promotion | $94,405 |
| Office expenses | $192,952 |
| Information technology | $208,113 |
| Royalties | $0 |
| Occupancy | $48,171 |
| Travel | $119,117 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $38,286 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $46,855 |
| Insurance | $6,090 |
| All other expenses | $0 |
| Total functional expenses | $4,705,271 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $0 |
| Savings and temporary cash investments | $1,118,758 |
| Pledges and grants receivable | $4,365,270 |
| Accounts receivable, net | $36,422 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $370,521 |
| Net Land, buildings, and equipment | $632,097 |
| Investments—publicly traded securities | $8,861,420 |
| Investments—other securities | $185,317 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $1,031,118 |
| Total assets | $16,600,923 |
| Accounts payable and accrued expenses | $340,647 |
| Grants payable | $768,750 |
| Deferred revenue | $214,061 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $185,317 |
| Total liabilities | $1,508,775 |
| Net assets without donor restrictions | $5,289,261 |
| Net assets with donor restrictions | $9,802,887 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $16,600,923 |
Grants Awarded
Over the last fiscal year, The Marfan Foundation Inc has awarded $425,450 in support to 5 organizations.
| Grant Recipient | Amount |
|---|---|
Baltimore, MD PURPOSE: RESEARCH | $201,350 |
Pittsburgh, PA PURPOSE: RESEARCH | $100,000 |
Somerville, MA PURPOSE: RESEARCH | $100,000 |
Englewood Cliffs, NJ PURPOSE: RESEARCH | $15,000 |
Rochester, MN PURPOSE: RESEARCH | $9,100 |
Grants Recieved
Over the last fiscal year, we have identified 3 grants that The Marfan Foundation Inc has recieved totaling $15,500.
| Awarding Organization | Amount |
|---|---|
The Sholton Foundation Anchorage, AK PURPOSE: PROMOTE RESEARCH ON TREATMENT OF MARFAN SYNDROME AND RELATED DISORDERS. | $10,000 |
The Mclean Family Foundation Wilmington, DE PURPOSE: CHARITABLE EVENT | $5,000 |
Flaherty Family Foundation Chicago, IL PURPOSE: GENERAL FUNDS | $500 |
Endowment Analysis
| Beg. Balance | $1,548,015 |
| Earnings | $37,897 |
| Ending Balance | $1,585,912 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Lymphoma Research Foundation New York, NY | $31,207,101 | $16,103,858 |
African Leaders Malaria Alliance Inc Laurelton, NY | $8,771,808 | $10,298,494 |
The Marfan Foundation Inc Port Washington, NY | $16,600,923 | $9,814,628 |
Prevention Links Roselle, NJ | $1,171,650 | $4,754,072 |
Learning Disabilities Association Of Western New York Inc Kenmore, NY | $2,525,018 | $4,880,891 |
Eb Research Partnership Inc New York, NY | $20,862,871 | $7,736,054 |
Yairockland County Association For People With Disabilities New York, NY | $0 | $3,637,352 |
Prevention Resources Inc Flemington, NJ | $1,493,246 | $2,776,493 |
United Mitochondrial Disease Foundation Inc Pittsburgh, PA | $5,488,767 | $3,021,406 |
Allegany Council On Alcoholism And Substance Abuse Inc Wellsville, NY | $2,491,126 | $2,749,912 |
Positudes Inc Westbury, NY | $32,648,999 | $5,043,435 |
Atlantic Prevention Resources Inc Absecon, NJ | $503,584 | $1,633,056 |