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EIN 13-6145280

Dysautonomia Foundation

IRS 501(c) type
501(c)(3)
Num. employees
5
City
New York
State
New York
Year formed
1954
Most recent tax filings
2023-12-01
NTEE code, primary
G50: Nerve, Muscle, and Bone Diseases
Description
The Familial Dysautonomia Foundation supports and operates programs focused on medical care, research, social services, and public education for the benefit of people affected by or at risk for Familial Dysautonomia FD.
Related structure
Dysautonomia Foundation is a parent organization to a group of 2 other organizations.
Also known as...
Familial Dysautonomia Foundation
Total revenues
$1,215,749
2023
Total expenses
$1,940,535
2023
Total assets
$1,503,412
2023
Num. employees
5
2023

Program areas at Dysautonomia Foundation

The Dysautonomia Foundation supports and operates programs focused on the medical care, research, social services, and public education for the benefit of people affected by or at risk for Familial Dysautonomia fd.

Grants made by Dysautonomia Foundation

GranteeGrant descriptionAmount
New York University (NYU)Research & Treatment$1,073,641

Who funds Dysautonomia Foundation

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
The Kopelman FoundationTo Fund the Recipients Operating Budget$100,000
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$88,550
GS Daf (GSPF)Medical$61,800
...and 29 more grants received totalling $475,947

Personnel at Dysautonomia Foundation

NameTitleCompensation
Lanie EtkindExecutive Director$225,000
Albulena PrelvukajDirector of Communications and Fundraising
Lisa NewmanBoard Member$0
Steven S. FassSecretary$0
Faye GinsburgPresident$0
...and 3 more key personnel

Financials for Dysautonomia Foundation

RevenuesFYE 12/2023
Total grants, contributions, etc.$572,214
Program services$0
Investment income and dividends$75,547
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$0
Net income from fundraising events$567,988
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$1,215,749

Form 990s for Dysautonomia Foundation

Fiscal year endingDate received by IRSFormPDF link
2023-122024-08-28990View PDF
2022-122023-10-31990View PDF
2021-122022-10-25990View PDF
2020-122021-11-15990View PDF
2019-122021-02-19990View PDF
...and 11 more Form 990s
Data update history
November 26, 2024
Received grants
Identified 2 new grant, including a grant for $2,500 from K & R Moelis Family Foundation
October 24, 2024
Posted financials
Added Form 990 for fiscal year 2023
October 2, 2024
Updated personnel
Identified 3 new personnel
July 13, 2024
Received grants
Identified 5 new grant, including a grant for $15,000 from Aw Dormeuil and R Dormeuil Foundation
May 19, 2024
Received grants
Identified 9 new grant, including a grant for $12,400 from Jewish Communal Fund
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsHeadquarter / parent organizationsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchFundraising eventsOperates internationallyFundraising races, competitions, and tournamentsTax deductible donationsAccepts online donations
General information
Address
315 W 39th St 701
New York, NY 10018
Metro area
New York-Newark-Jersey City, NY-NJ-PA
County
New York County, NY
Website URL
familialdysautonomia.org/ 
Phone
(212) 279-1066
IRS details
EIN
13-6145280
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1954
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G50: Nerve, Muscle, and Bone Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Parent of group exemption
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
CT0268269
FTB Entity ID
None yet
AB 488 data last updated ("as-of") date
2025-01-15
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