EIN 52-1265361

The Marfan Foundation

IRS 501(c) type
501(c)(3)
Num. employees
25
Year formed
1981
Most recent tax filings
2023-06-01
Description
The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome, loeys dietz, vascular ehlers-danlos and other genetic aortic conditions. - we pursue The most innovative research and make sure that it receives proper funding.
Total revenues
$8,195,380
2023
Total expenses
$6,758,497
2023
Total assets
$18,561,612
2023
Num. employees
25
2023

Program areas at The Marfan Foundation

Research - see schedule o.research - expenses $2,411,213, grants $1,068,916, revenue $112,865the 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 genetic aortic and vascular conditions. Our research program has advanced science for 41 years, funding 170 research grants since 1986. The research we've supported has helped reduce life-threatening problems, identified treatments that have improved The 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 grants 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 symposia 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.
Education - see schedule o.education - expenses $1,193,283, grants $6,634, revenue $10,340the Marfan Foundation and its divisions (loeys-dietz, veds, and gentac) 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. We connect thousands of individuals and families to The 70 institutions nationwide that offer experience and expertise in Marfan, lds, veds, and genetic aortic and vascular conditions.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 over 5,000 people every year -- directed by an in-house nurse and bilingual manager who answer questions by phone and email, and through its comprehensive website, which is available in 25 languages. Extensive information is available for individuals, families, and medical professionals, with 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 domestically and worldwide.
Support - see schedule o.support - expenses $1,885,822, grants $40,377, revenue $102,001the 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 it reaches a worldwide audience digitally and through in-person programming. The Marfan Foundation connects thousands of individuals and families to The 70 nationwide institutions offering experience and expertise in Marfan, lds, veds, and 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 patients and families. The Foundation is focused on reaching more people in traditionally underserved communities, increasing health equity, and fostering additional access to care.

Grants made by The Marfan Foundation

GranteeGrant descriptionAmount
Johns Hopkins University (JHU)Research$350,600
Duke UniversityResearch$220,000
Baylor College of Medicine (BCM)Research$100,000
...and 4 more grants made

Who funds The Marfan Foundation

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Jewish Communal FundIn Furtherance of Grantee's Tax-Exempt Purpose$975,000
Bloomberg PhilanthropiesGeneral Support$975,000
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$208,530
...and 54 more grants received totalling $2,975,520

Personnel at The Marfan Foundation

NameTitleCompensation
Michael WeamerPresident and Chief Executive Officer$409,261
Judy GibaldiChief Operating Officer
Inderjeet Kaur, CPAChief Financial Officer$145,687
April Dawn ShinskeChief Communications and Marketing Officer
Helaine BaruchChief Philanthropy Officer$233,191
...and 26 more key personnel

Financials for The Marfan Foundation

RevenuesFYE 06/2023
Total grants, contributions, etc.$7,656,928
Program services$225,206
Investment income and dividends$317,063
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$-3,817
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$8,195,380

Form 990s for The Marfan Foundation

Fiscal year endingDate received by IRSFormPDF link
2023-062023-10-26990View PDF
2022-062022-10-31990View PDF
2021-062021-11-03990View PDF
2020-062021-02-22990View PDF
2019-062020-01-24990View PDF
...and 10 more Form 990s

Organizations like The Marfan Foundation

OrganizationLocationRevenue
Children's Tumor FoundationNew York, NY$16,990,325
Autism SpeaksWashington, DC$36,262,685
Epilepsy FoundationBowie, MD$17,841,214
Tourette Association of AmericaBayside, NY$4,883,886
CancerCareNew York, NY$18,775,453
Lupus Foundation of AmericaWashington, DC$17,248,744
The Cure Starts NowCincinnati, OH$5,080,693
The Children's Heart FoundationNorthbrook, IL$3,378,951
Preeclampsia FoundationMelbourne, FL$2,164,264
Hydrocephalus Association (HA)Bethesda, MD$3,628,383
Data update history
September 21, 2024
Received grants
Identified 14 new grant, including a grant for $100,000 from Centene Foundation
May 18, 2024
Received grants
Identified 23 new grant, including a grant for $975,000 from Jewish Communal Fund
January 29, 2024
Updated personnel
Identified 15 new personnel
December 1, 2023
Posted financials
Added Form 990 for fiscal year 2023
November 30, 2023
Updated personnel
Identified 1 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsHeadquarter / parent organizationsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchLobbyingFundraising eventsOperates internationallyNational levelReceives government fundingEndowed supportCommunity engagement / volunteeringGala fundraisersTax deductible donationsAccepts online donations
General information
Address
22 Manhasset Ave
Port Washington, NY 11050
Metro area
New York-Newark-Jersey City, NY-NJ-PA
County
Nassau County, NY
Website URL
marfan.org/ 
Phone
(516) 883-8712
Facebook page
TheMarfanFoundation 
Twitter profile
@nmf_marfan 
IRS details
EIN
52-1265361
Fiscal year end
June
Taxreturn type
Form 990
Year formed
1981
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G43: Heart and Circulatory System Diseases, Disorders
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
California AB-488 details
AB 488 status
May Operate or Solicit for Charitable Purposes
Charity Registration status
Current
FTB status revoked
Not revoked
AG Registration Number
070390
FTB Entity ID
1621703
AB 488 data last updated ("as-of") date
2024-10-16
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