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EIN 06-1057497

Cornelia de Lange Syndrome Foundation

IRS 501(c) type
501(c)(3)
Num. employees
11
City
Avon
State
Connecticut
Year formed
1981
Most recent tax filings
2022-12-01
NTEE code, primary
G80: Specifically Named Diseases
Description
The Cornelia de Lange Syndrome Foundation is a family support organization that strives to ensure early and accurate diagnosis of CdLS, promotes research into the causes and manifestations of the syndrome, and helps people with a diagnosis of CdLS and others with similar characteristics make informed decisions. The foundation provides professional education outreach and awareness, as well as public information and education.
Total revenues
$1,084,533
2022
Total expenses
$1,077,537
2022
Total assets
$2,928,508
2022
Num. employees
11
2022

Program areas at Cornelia de Lange Syndrome Foundation

Family support programs
Professional education outreach & awareness
Public information & education

Who funds Cornelia de Lange Syndrome Foundation

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Jewish Community Federation and Endowment FundHealth$140,000
American Online Giving FoundationGeneral Support$46,261
Schwab Charitable FundHealth$15,350
...and 8 more grants received

Personnel at Cornelia de Lange Syndrome Foundation

NameTitleCompensation
Bonnie RoysterExecutive Director
Gabrielle NadeauCommunications Manager
Deirdre SummaFamily Service Manager
Morrisette RoysterPast Executive Director$111,395
Antonie KlineMD Director / Medical Director$0
...and 8 more key personnel

Financials for Cornelia de Lange Syndrome Foundation

RevenuesFYE 12/2022
Total grants, contributions, etc.$947,009
Program services$0
Investment income and dividends$32,915
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$7,288
Net income from fundraising events$97,321
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$1,084,533

Form 990s for Cornelia de Lange Syndrome Foundation

Fiscal year endingDate received by IRSFormPDF link
2022-122023-11-15990View PDF
2021-122022-10-19990View PDF
2020-122021-09-01990View PDF
2019-122021-03-01990View PDF
2018-122019-12-20990View PDF
...and 8 more Form 990s
Data update history
January 9, 2024
Posted financials
Added Form 990 for fiscal year 2022
January 8, 2024
Updated personnel
Identified 1 new personnel
January 2, 2024
Received grants
Identified 3 new grant, including a grant for $5,633 from AmazonSmile Foundation
November 25, 2023
Posted financials
Added Form 990 for fiscal year 2021
July 8, 2023
Updated personnel
Identified 6 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchFundraising eventsNational levelCommunity engagement / volunteeringFundraising races, competitions, and tournamentsTax deductible donations
General information
Address
30 Tower LN 400
Avon, CT 06001
Metro area
Hartford-East Hartford-Middletown, CT
County
09110
Website URL
cdlsusa.org/ 
Phone
(860) 676-8166
IRS details
EIN
06-1057497
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1981
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G80: Specifically Named Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
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