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EIN 46-3208388

Koolen-de Vries Syndrome Foundation

IRS 501(c) type
501(c)(3)
Num. employees
0
City
Wilmington
State
North Carolina
Year formed
2013
Most recent tax filings
2023-12-01
NTEE code, primary
G80: Specifically Named Diseases
Description
The Koolen-de Vries Syndrome Foundation hosts patient advocacy summits and social gathering events for the kdvs community and interested medical professionals. The foundation also promotes research of kdvs in fields including clinical, drug therapy, speech therapy, and epilepsy.
Also known as...
Supporting Families with Koolen Syndrome
Total revenues
$305,621
2023
Total expenses
$324,564
2023
Total assets
$580,616
2023
Num. employees
0
2023

Program areas at Koolen-de Vries Syndrome Foundation

Promoting research of kdvs in fields including clinical, drug therapy, speech therapy, and epilepsy.
Increasing awareness of kdvs in both the general population and medical profession.
Providing patient advocacy summits and social gathering events for the kdvs community and interested medical professionals.

Grants made by Koolen-de Vries Syndrome Foundation

GranteeGrant descriptionAmount
Emory UniversityTo Promote the Clinical Research of Koolen De Vries Syndrome$57,500
University of California San Francisco Foundation (UCSF)To Promote the Clinical Research of Koolen De Vries Syndrome$52,372
CURE Epilepsy (CURE)To Promote the Clinical Research of Koolen De Vries Syndrome$29,500
...and 1 more grant made

Who funds Koolen-de Vries Syndrome Foundation

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$7,000
Bertin Family FoundationGeneral Charitable Purposes$5,000
AmazonSmile FoundationGeneral Support$1,703
...and 1 more grant received

Personnel at Koolen-de Vries Syndrome Foundation

NameTitleCompensation
Gabriel StagnerTreasurer$0
Alayna HaynamVice President$0
Ashley PointPresident$0
Andy SpeirsPast Treasurer$0

Financials for Koolen-de Vries Syndrome Foundation

RevenuesFYE 12/2023
Total grants, contributions, etc.$260,020
Program services$45,594
Investment income and dividends$7
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$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$305,621

Form 990s for Koolen-de Vries Syndrome Foundation

Fiscal year endingDate received by IRSFormPDF link
2022-122023-08-15990View PDF
2021-122022-11-14990View PDF
2020-122021-11-15990View PDF
2019-122021-02-24990View PDF
2018-122020-06-23990View PDF
Data update history
October 21, 2024
Received grants
Identified 2 new grant, including a grant for $5,000 from Bertin Family Foundation
December 27, 2023
Received grants
Identified 1 new grant, including a grant for $5,000 from Bertin Family Foundation
September 30, 2023
Posted financials
Added Form 990 for fiscal year 2022
September 30, 2023
Updated personnel
Identified 1 new personnel
August 17, 2023
Posted financials
Added Form 990 for fiscal year 2021
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Provides grantsConducts researchNational levelTax deductible donationsNo full-time employeesAccepts online donations
General information
Address
609a Piner Rd 319
Wilmington, NC 28409
Metro area
Wilmington, NC
County
New Hanover County, NC
Website URL
kdvsfoundation.org/ 
Phone
(833) 731-5387
IRS details
EIN
46-3208388
Fiscal year end
December
Taxreturn type
Form 990
Year formed
2013
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
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
CT0273017
FTB Entity ID
None yet
AB 488 data last updated ("as-of") date
2024-11-06
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