Totals
- Total revenue
- $5,486,020
- Total expenses
- $6,646,776
- Contributions and grants received
- $4,878,044
- Grants paid
- $1,172,413
- Program service revenue
- $131,150
- Investment income
- $476,826
- Other revenue
- $0
- Total assets, end of year
- $18,118,070
- Total liabilities, end of year
- $1,860,516
- Net assets or fund balances, end of year
- $16,257,554
- Program services expenses (Part IX)
- $5,447,704
- Management and general expenses
- $466,475
- Fundraising expenses
- $732,597
- Program service expenses (Part III)
- $5,447,704
Program services were 82.0% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
Line items
Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.
Revenue
Part VIII, the statement of revenue.
-
1c · Fundraising events
$2,905,528
-
1f · All other contributions, gifts and grants
$1,972,516
-
1g · Noncash contributions included above
$33,591
-
2a · Program service revenue: MARFAN CONFERENCE
total $116,428 · related or exempt $116,428
-
2b · Program service revenue: OTHER CONFERENCES
total $14,722 · related or exempt $14,722
-
3 · Investment income
total $431,623 · excluded $431,623
-
7a · Gross sales of assets other than inventory
securities $3,161,822
-
7b · Less cost or other basis and sales expenses
securities $3,116,619
-
7c · Gain or loss
securities $45,203
-
7d · Net gain or loss
total $45,203 · excluded $45,203
-
8a · Fundraising events: gross income
$937,845
-
8a · Fundraising events: contributions included on line 1c
$2,905,528
-
8b · Fundraising events: direct expenses
$937,845
-
8c · Net income from fundraising events
total $0
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $681,370 · program services $681,370
-
2 · Grants to domestic individuals
total $71,043 · program services $71,043
-
3 · Grants to foreign organizations and individuals
total $420,000 · program services $420,000
-
5 · Compensation of officers, directors and key employees
total $832,290 · program services $655,587 · management and general $151,756 · fundraising $24,947
-
7 · Other salaries and wages
total $2,384,033 · program services $1,906,509 · management and general $161,159 · fundraising $316,365
-
9 · Other employee benefits
total $292,759 · program services $226,448 · management and general $35,658 · fundraising $30,653
-
10 · Payroll taxes
total $212,581 · program services $167,867 · management and general $21,245 · fundraising $23,469
-
11c · Fees: accounting
total $38,951 · management and general $38,951
-
11d · Fees: lobbying
total $15,000 · program services $15,000
-
11f · Fees: investment management
total $12,093 · program services $11,883 · management and general $105 · fundraising $105
-
11g · Fees: other
total $111,790 · program services $110,208 · management and general $1,551 · fundraising $31
-
12 · Advertising and promotion
total $86,957 · program services $66,742 · management and general $139 · fundraising $20,076
-
13 · Office expenses
total $257,328 · program services $169,674 · management and general $19,984 · fundraising $67,670
-
14 · Information technology
total $226,159 · program services $185,701 · management and general $7,420 · fundraising $33,038
-
16 · Occupancy
total $54,601 · program services $37,295 · management and general $8,653 · fundraising $8,653
-
17 · Travel
total $413,289 · program services $266,532 · management and general $2,160 · fundraising $144,597
-
19 · Conferences, conventions and meetings
total $387,343 · program services $377,180 · fundraising $10,163
-
22 · Depreciation, depletion and amortization
total $49,955 · program services $29,973 · management and general $9,991 · fundraising $9,991
-
23 · Insurance
total $9,625 · program services $5,775 · management and general $1,925 · fundraising $1,925
-
24a · Other expenses: MISC/EVENT DECOR/STAFF
total $64,755 · program services $29,850 · management and general $0 · fundraising $34,905
-
24b · Other expenses: DUES AND SUBSCRIPTIONS
total $21,111 · program services $9,324 · management and general $5,778 · fundraising $6,009
-
24c · Other expenses: FEES AND PERMITS
total $3,743 · program services $3,743
Balance sheet
Part X, book values.
-
2 · Savings and temporary cash investments
beginning of year $826,752 · end of year $2,029,585
-
3 · Pledges and grants receivable
beginning of year $3,194,059 · end of year $2,096,801
-
4 · Accounts receivable
beginning of year $203,386 · end of year $16,549
-
9 · Prepaid expenses and deferred charges
beginning of year $184,515 · end of year $204,159
-
10a · Land, buildings and equipment: cost or other basis
$1,552,400
-
10b · Land, buildings and equipment: accumulated depreciation
$995,920
-
10c · Land, buildings and equipment, net
beginning of year $606,435 · end of year $556,480
-
11 · Investments: publicly traded securities
beginning of year $12,270,093 · end of year $11,853,616
-
12 · Investments: other securities
beginning of year $219,091 · end of year $260,077
-
15 · Other assets
beginning of year $1,057,281 · end of year $1,100,803
-
17 · Accounts payable and accrued expenses
beginning of year $482,564 · end of year $544,203
-
18 · Grants payable
beginning of year $800,000 · end of year $970,000
-
19 · Deferred revenue
beginning of year $216,461 · end of year $86,236
-
25 · Other liabilities
beginning of year $219,091 · end of year $260,077
-
27 · Net assets without donor restrictions
beginning of year $7,373,915 · end of year $8,150,927
-
28 · Net assets with donor restrictions
beginning of year $9,469,581 · end of year $8,106,627
Mission and programs · 2023
Mission
SEE SCHEDULE O.THE MARFAN FOUNDATION SAVES LIVES AND IMPROVES THE QUALITY OF LIFE OF INDIVIDUALS WITH GENETIC AORTIC AND VASCULAR CONDITIONS, INCLUDING MARFAN, LOEYS-DIETZ, AND VASCULAR EHLERS-DANLOS (VEDS) SYNDROMES WHILE CREATING COMMUNITY. WE PURSUE THE MOST INNOVATIVE RESEARCH AND MAKE SURE THAT IT RECEIVES PROPER FUNDING. WE FOSTER AN INFORMED PUBLIC AND EDUCATED PATIENT COMMUNITY TO INCREASE EARLY DIAGNOSIS AND ENSURE LIFE-SAVING TREATMENT. WE PROVIDE DEDICATED SUPPORT TO FAMILIES, CAREGIVERS, AND HEALTHCARE PROVIDERS.
Activities or mission (Part I)
SEE SCHEDULE O.THE MARFAN FOUNDATION SAVES LIVES AND IMPROVES THE QUALITY OF LIFE OF INDIVIDUALS WITH GENETIC AORTIC AND VASCULAR CONDITIONS INCLUDING MARFAN, LOEYS-DIETZ, AND VASCULAR EHLERS-DANLOS SYNDROMES.
-
SEE SCHEDULE O.RESEARCH -EXPENSES $2,248,000, GRANTS $1,090,810, REVENUE $0THE MARFAN FOUNDATION ADVANCES RESEARCH THAT SAVES LIVES AND DRAMATICALLY ENHANCES THE QUALITY OF LIFE FOR PEOPLE LIVING WITH MARFAN SYNDROME, LOEYS-DIETZ SYNDROME, VEDS, AND RELATED GENETIC AORTIC AND VASCULAR CONDITIONS. OUR RESEARCH PROGRAM HAS ADVANCED SCIENCE SINCE 1981, FUNDING 176 RESEARCH GRANTS SINCE 1986. THE RESEARCH WE'VE SUPPORTED HAS HELPED REDUCE LIFE-THREATENING PROBLEMS, IDENTIFIED TREATMENTS THAT HAVE IMPROVED QUALITY OF LIFE, AND HELPED PEOPLE LIVE LONGER LIVES WITH MARFAN SYNDROME AND RELATED CONDITIONS. THE MARFAN FOUNDATION COLLABORATES WITH THE RESEARCH COMMUNITY AND ORGANIZATIONS TO IDENTIFY NEW THERAPIES AND TREATMENTS DOMESTICALLY AND AROUND THE GLOBE. THE FOUNDATION'S TWO-YEAR AND FOUR-YEAR GRANT MECHANISMS HELP ENSURE A PIPELINE OF DEDICATED FELLOWS, NEW INVESTIGATORS, AND FACULTY MEMBERS WHO ARE COMMITTED TO THE SCIENTIFIC DISCOVERY NECESSARY TO ADVANCE UNDERSTANDING OF RARE DISEASES. THE FOUNDATION CONVENES NATIONAL AND INTERNATIONAL RESEARCH CONFERENCES, FACILITATES COLLABORATIONS AMONG RESEARCHERS AND RESEARCH INSTITUTIONS, AND HOLDS SYMPOSIUMS IN THE US AND ABROAD TO FACILITATE THE SHARING OF RESEARCH FINDINGS THAT EXPEDITE PROGRESS. THE MARFAN FOUNDATION PARTNERS WITH GOVERNMENT AGENCIES AND OTHER HEALTHCARE ORGANIZATIONS TO ADVANCE ITS RESEARCH GOALS AND ADVOCATE FOR ADDITIONAL RESEARCH FUNDING FROM THE GOVERNMENT.
Expenses $2,248,000 · Grants $1,090,810
-
SEE SCHEDULE O.SUPPORT -EXPENSES $2,059,592, GRANTS $76,323, REVENUE $131,140THE MARFAN FOUNDATION ALWAYS HAS THE LATEST AND MOST ACCURATE INFORMATION ABOUT MARFAN, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS (VEDS), AND OTHER GENETIC AORTIC AND VASCULAR CONDITIONS, AND IT REACHES A WORLDWIDE AUDIENCE DIGITALLY AND THROUGH IN-PERSON PROGRAMMING. THE MARFAN FOUNDATION CONNECTS THOUSANDS OF INDIVIDUALS AND FAMILIES TO MORE THAN 70 U.S. AND A GROWING NUMBER OF GLOBAL INSTITUTIONS OFFERING EXPERIENCE AND 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 AND OTHER LANGUAGES TO BETTER SERVE AFFECTED PEOPLE AND THEIR SUPPORT NETWORKS. THE FOUNDATION IS FOCUSED ON REACHING MORE PEOPLE IN MARGINALIZED COMMUNITIES, INCREASING HEALTH EQUITY, AND FOSTERING ADDITIONAL ACCESS TO CARE.
Expenses $2,059,592 · Grants $76,323 · Revenue $131,140
-
SEE SCHEDULE O.EDUCATION - EXPENSES $1,140,112, GRANTS $5,280, REVENUE $10THE MARFAN FOUNDATION AND ITS DIVISIONS (THE LOEYS-DIETZ SYNDROME FOUNDATION, THE VEDS MOVEMENT, AND THE GENTAC ALLIANCE) ARE THE PREEMINENT PROVIDERS OF INFORMATION AND PROGRAMS FOR AFFECTED INDIVIDUALS AND FAMILIES WITH GENETIC AORTIC AND VASCULAR CONDITIONS, MEDICAL PROFESSIONALS, RESEARCHERS, AND THE GENERAL PUBLIC. WE REACH ONE MILLION PEOPLE ANNUALLY WITH OUR EDUCATIONAL RESOURCES. THE MARFAN FOUNDATION OFFERS A WEALTH OF MEDICAL AND QUALITY-OF-LIFE INFORMATION FOR PEOPLE LIVING WITH MARFAN SYNDROME, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS (VEDS), AND RELATED CONDITIONS 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 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.
Expenses $1,140,112 · Grants $5,280 · Revenue $10
As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.
Listed in Part VII
-
Bert MedinaBERT MEDINA
CHAIR
- Total calculated
- $0
- Hours/week
- 8
-
Cory A EavesCORY A EAVES
IMMEDIATE PAST CHAIR
- Total calculated
- $0
- Hours/week
- 1
-
Caryn E Kauffman CPACARYN E KAUFFMAN CPA
TREASURER
- Total calculated
- $0
- Hours/week
- 3
-
Patricia McCabe EstradaPATRICIA MCCABE ESTRADA
SECRETARY
- Total calculated
- $0
- Hours/week
- 1
-
Jerry L LermanJERRY L LERMAN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Alan Braverman MDALAN BRAVERMAN MD
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Brandy Banks HotchkissBRANDY BANKS HOTCHKISS
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Gil BasheGIL BASHE
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Joaquin Ramos JrJOAQUIN RAMOS JR
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Jeffrey C LesageJEFFREY C LESAGE
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Sinclair LiSINCLAIR LI
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
David WarrenDAVID WARREN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Andrew ToyANDREW TOY
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Gary KauffmanGARY KAUFFMAN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Jon TullisJON TULLIS
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Scott D Avitabile EsqSCOTT D AVITABILE ESQ
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Anthony Yasick MDANTHONY YASICK MD
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Juan Bowen MDJUAN BOWEN MD
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Ray ChevallierRAY CHEVALLIER
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
James PrutowJAMES PRUTOW
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Dawn ReinerDAWN REINER
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Michael L WeamerMICHAEL L WEAMER
PRES/CEO
- Total calculated
- $484,657
- From this org
- $457,343
- From related orgs
- $0
- Other
- $27,314
- Hours/week
- 35
Schedule J breakdown matched by us
- Base
- $457,343
- Bonus
- $0
- Other
- $0
- Deferred
- $10,000
- Nontaxable benefits
- $17,314
- Filer's total
- $484,657
-
Inderjeet Kaur CPAINDERJEET KAUR CPA
CHIEF FINANCIAL OFFICER
- Total calculated
- $172,150
- From this org
- $154,779
- From related orgs
- $0
- Other
- $17,371
- Hours/week
- 35
Schedule J breakdown matched by us
- Base
- $154,779
- Bonus
- $0
- Other
- $0
- Deferred
- $0
- Nontaxable benefits
- $17,371
- Filer's total
- $172,150
-
Judith GibaldiJUDITH GIBALDI
CHIEF OPERATIONS OFFICER
- Total calculated
- $145,691
- From this org
- $118,377
- From related orgs
- $0
- Other
- $27,314
- Hours/week
- 35
-
Helaine BaruchHELAINE BARUCH
CHIEF DEVELOPMENT OFFICER
- Total calculated
- $261,193
- From this org
- $243,822
- From related orgs
- $0
- Other
- $17,371
- Hours/week
- 35
Schedule J breakdown matched by us
- Base
- $243,822
- Bonus
- $0
- Other
- $0
- Deferred
- $0
- Nontaxable benefits
- $17,371
- Filer's total
- $261,193
-
Josephine GrimaJOSEPHINE GRIMA
CHIEF SCIENCE OFFICER
- Total calculated
- $224,966
- From this org
- $207,595
- From related orgs
- $0
- Other
- $17,371
- Hours/week
- 35
Schedule J breakdown matched by us
- Base
- $207,595
- Bonus
- $0
- Other
- $0
- Deferred
- $0
- Nontaxable benefits
- $17,371
- Filer's total
- $224,966
-
Eileen NovinsEILEEN NOVINS
CHIEF GLOBAL BUSINESS DEVEL. OFFICER
- Total calculated
- $206,392
- From this org
- $189,021
- From related orgs
- $0
- Other
- $17,371
- Hours/week
- 35
Schedule J breakdown matched by us
- Base
- $189,021
- Bonus
- $0
- Other
- $0
- Deferred
- $0
- Nontaxable benefits
- $17,371
- Filer's total
- $206,392
-
Lauren E MayLAUREN E MAY
DIRECTOR OF RESEARCH
- Total calculated
- $149,308
- From this org
- $131,937
- From related orgs
- $0
- Other
- $17,371
- Hours/week
- 35
-
Kimberly K HuddlestonKIMBERLY K HUDDLESTON
VP. OF DEVELOPMENT
- Total calculated
- $135,325
- From this org
- $117,954
- From related orgs
- $0
- Other
- $17,371
- Hours/week
- 35
Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.
Schedule J
Answered yes
- 3 · Compensation committee
- 3 · Form 990 of other organizations
- 3 · Compensation survey or study
- 3 · Approval by the board or compensation committee
Answered no
- 4a · Severance or change-of-control payment
- 4b · Supplemental nonqualified retirement plan
- 4c · Equity-based compensation arrangement
- 5a · Pay contingent on this organization's revenues
- 5b · Pay contingent on a related organization's revenues
- 6a · Pay contingent on this organization's net earnings
- 6b · Pay contingent on a related organization's net earnings
- 7 · Other non-fixed payments
- 8 · Paid under the initial-contract exception
The filer's explanations (Part III)
- PART I, LINE 3
- WE RELY ON THE WRITTEN COMPENSATION SURVEYS PUBLISHED BY PRM CONSULTING GROUP WHICH PROVIDES A MANAGEMENT COMPENSATION REPORT FOR NOT-FOR-PROFIT ORGANIZATIONS. WE REVIEW THIS REPORT ANNUALLY TO STAY INFORMED REGARDING COMPENSATION TRENDS.
Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.
Grants on this return
-
RESEARCH
-
$100,900
RESEARCH
-
$100,000
RESEARCH
-
NYU GROSSMAN SCHOOL OF MEDICINE
$100,000
RESEARCH
-
$84,222
RESEARCH
-
WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY
$18,900
RESEARCH
-
$15,000
RESEARCH
-
RESEARCH
Provenance
- Return type
- form_990
- Tax year
- 2023
- Filed
- 23 October 2024
- IRS schema version
- 2023v5.1
- Source object
- 202442989349301809
Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.
The source document this was parsed from is served over the API, which is where bulk and document access live.