Skip to main content

Nonprofit · EIN 46-3208388

KOOLEN-DE VRIES SYNDROME FOUNDATION

Tax-exempt · WILMINGTON, NC 28409

Financials

$306K$325K2023$263K$270K2024$381K$220K2025
Revenue Expenses · by fiscal year end
Financials of KOOLEN-DE VRIES SYNDROME FOUNDATION by year, from its e-filed returns
Year endedFormRevenueExpensesNet incomeTotal assetsLiabilitiesNet assets
December 31, 2025990$381,306$220,301$161,005$734,526$0$734,526
December 31, 2024990$263,173$270,270-$7,097$573,519$0$573,519
December 31, 2023990$305,621$324,564-$18,943$580,616$0$580,616
Financial details: 990 for the year ended December 31, 2025

Revenue

Contributions, gifts and grants
$324,099
Program service revenue
$52,020
Investment income
$5,187
Other revenue
$0

Expenses

Grants and similar amounts paid
$0
Salaries, compensation and benefits (total)
$0
Professional fundraising fees
$0
Accounting fees
$9,500
Travel
$3,840
Program services (functional)
$193,273
Management and general (functional)
$18,746
Fundraising (functional)
$8,282

Balance sheet and other

Total assets, start of year
$573,519
Total assets, end of year
$734,526
Total liabilities, end of year
$0
Net assets, end of year
$734,526
Net assets without donor restrictions
$492,151
Net assets with donor restrictions
$242,375
Gross receipts
$381,306
Employees
0
Volunteers
0
Year formed
2013
State of legal domicile
MO

From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.

Officers, directors and key employees

As listed on the 990 for the year ended December 31, 2025, highest compensation first.

NameTitleHours / weekCompensation
ALAYNA HAYNAMBOARD MEMBER
Trustee or director
1$0
ASHLEY POINTPRESIDENT
Trustee or director, Officer
10$0
CINDY ASBURYBOARD MEMBER
Trustee or director
1$0
EMILY LEMKEBOARD MEMBER
Trustee or director
2$0
GABRIEL STAGNERTREASURER
Trustee or director, Officer
5$0
JESSICA COLLIERBOARD MEMBER
Trustee or director
5$0
KACI FISHERBOARD MEMBER
Trustee or director
5$0
MARIA LUISA VALENTIN DE SOLISBOARD MEMBER
Trustee or director
1$0
KATIE MAHERBOARD MEMBER
Trustee or director
2$0
MATT HOLCOMBEBOARD MEMBER
Trustee or director
1$0
MEGAN HARTWELLBOARD MEMBER
Trustee or director
2$0
990 for the year ended December 31, 2024: 12 people
NameTitleHours / weekCompensation
ALAYNA HAYNAMBOARD MEMBER
Trustee or director
1$0
ASHLEY POINTPRESIDENT
Trustee or director, Officer
10$0
CINDY ASBURYBOARD MEMBER
Trustee or director
1$0
EMILY LEMKEBOARD MEMBER
Trustee or director
2$0
GABRIEL STAGNERTREASURER
Trustee or director, Officer
5$0
JESSICA COLLIERBOARD MEMBER
Trustee or director
5$0
KACI FISHERBOARD MEMBER
Trustee or director
5$0
NEAL DERMERERBOARD MEMBER
Trustee or director
1$0
MARIA LUISA VALENTIN DE SOLISBOARD MEMBER
Trustee or director
1$0
KATIE MAHERBOARD MEMBER
Trustee or director
2$0
MATT HOLCOMBEBOARD MEMBER
Trustee or director
1$0
MEGAN HARTWELLBOARD MEMBER
Trustee or director
2$0
990 for the year ended December 31, 2023: 11 people
NameTitleHours / weekCompensation
ALAYNA HAYNAMVICE-PRESIDENT
Trustee or director, Officer
5$0
ASHLEY POINTPRESIDENT
Trustee or director, Officer
5$0
CINDY ASBURYBOARD MEMBER
Trustee or director
1$0
EMILY LEMKEBOARD MEMBER
Trustee or director
2$0
GABRIEL STAGNERTREASURER
Trustee or director, Officer
5$0
JESSICA COLLIERBOARD MEMBER
Trustee or director
2$0
KACI FISHERBOARD MEMBER
Trustee or director
5$0
NEAL DERMERERBOARD MEMBER
Trustee or director
1$0
MARIA LUISA VALENTIN DE SOLISBOARD MEMBER
Trustee or director
1$0
KATIE MAHERBOARD MEMBER
Trustee or director
2$0
MATT HOLCOMBEBOARD MEMBER
Trustee or director
1$0

Address and contacts

Address (IRS master file)
609A PINER ROAD 319, WILMINGTON, NC 28409-4201
In care of
% ANDY SPEIRS
Mailing address (990-N for 2017)
PO BOX 470218, FORT WORTH TX 76147
Principal officer (990 for 2025)
GABRIEL STAGNER, 609A PINER ROAD SUITE 319, WILMINGTON, NC 28409
Principal officer (990-N for 2017)
PATTY TIBERG, PO BOX 470218, FORT WORTH TX 76147
Signed the 990
GABRIEL STAGNER, TREASURER
Phone
(833) 731-5387
Return prepared by
MRM TAX AND CONSULTING LLC

Mission

THE KOOLEN-DE VRIES SYNDROME FOUNDATION IS AN INTERNATIONAL GROUP THAT SUPPORTS, INFORMS, AND NETWORKS WITH ANYONE AFFECTED BY KOOLEN-DE VRIES SYNDROME (KDVS) AND WITH ANY INTERESTED PROFESSIONALS. THE FOUNDATION'S ACTIVITIES INCLUDE SOCIAL (CONTINUED ON SCHEDULE O) GATHERINGS, PATIENT ADVOCACY SUMMITS, SUPPORTING RESEARCH, AND PROVIDING INFORMATION REGARDING KDVS TO BOTH THE GENERAL POPULATION AND MEDICAL PROFESSIONALS.

990 for the year ended December 31, 2025

Program accomplishments

  • PROMOTING RESEARCH OF KDVS IN FIELDS INCLUDING CLINICAL, DRUG THERAPY, SPEECH THERAPY, AND EPILEPSY.
    Expenses $19,617
  • PROVIDING PATIENT ADVOCACY SUMMITS AND SOCIAL GATHERING EVENTS FOR THE KDVS COMMUNITY AND INTERESTED MEDICAL PROFESSIONALS.
    Expenses $155,944 · revenue $52,020
  • INCREASING AWARENESS OF KDVS IN BOTH THE GENERAL POPULATION AND MEDICAL PROFESSION.
    Expenses $17,712

What it must file and when

IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.

Tax yearYear endedDueIRS public records
2025December 31, 2025May 15, 2026990 on file
2024December 31, 2024May 15, 2025990 on file
2023December 31, 2023May 15, 2024990 on file

IRS record

EIN
46-3208388
Tax-exempt status
501(c)(3): Charitable, religious, educational or scientific organization
Foundation status
Publicly supported organization (170(b)(1)(A)(vi))
Donations deductible (Pub 78)
Public charity, 50% deduction limit
Exempt since
2013
Accounting year ends
December
Files
Form 990 or 990-EZ
Assets (IRS master file)
$734,526
Income (IRS master file)
$381,306

Filing history

FormYear endedRevenueExpensesAssetsReturn
990December 2025$381,306$220,301$734,526XML
990December 2024$263,173$270,270$573,519XML
990December 2023$305,621$324,564$580,616XML
990December 2022$237,465$41,563$599,559IRS
990December 2021–––IRS
990December 2020–––IRS
990-N for 2017
Officer: PATTY TIBERG
December 31, 2017≤ $50,000 receipts––e-Postcard

990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 46-3208388).

Questions about KOOLEN-DE VRIES SYNDROME FOUNDATION

What is the EIN of KOOLEN-DE VRIES SYNDROME FOUNDATION?
The employer identification number (EIN) of KOOLEN-DE VRIES SYNDROME FOUNDATION is 46-3208388.
Is KOOLEN-DE VRIES SYNDROME FOUNDATION tax-exempt?
Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2013.
Are donations to KOOLEN-DE VRIES SYNDROME FOUNDATION tax-deductible?
Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
Which annual return does KOOLEN-DE VRIES SYNDROME FOUNDATION file?
Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
When is the next return of KOOLEN-DE VRIES SYNDROME FOUNDATION due?
The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
When did KOOLEN-DE VRIES SYNDROME FOUNDATION last file with the IRS?
The latest return in the IRS public files is the 990 for the year ended December 2025.
Who is the principal officer of KOOLEN-DE VRIES SYNDROME FOUNDATION?
The 990 for the year ended December 31, 2025 names GABRIEL STAGNER.
Who are the officers and directors of KOOLEN-DE VRIES SYNDROME FOUNDATION?
The 990 for the year ended December 31, 2025 lists 11 people; 0 received compensation from the organization.
How much revenue does KOOLEN-DE VRIES SYNDROME FOUNDATION have?
On its 990 for the year ended December 31, 2025 it reported revenue of $381,306, expenses of $220,301 and total assets of $734,526 at year end.

Other nonprofits in WILMINGTON

All nonprofits in WILMINGTON · North Carolina · Voluntary health associations and medical disciplines