KOOLEN-DE VRIES SYNDROME FOUNDATION Charity Report

Public IRS 990 nonprofit record

KOOLEN-DE VRIES SYNDROME FOUNDATION

EIN 46-3208388 · Specifically Named Diseases (G80)

What they do

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

Before you give

Should I give to this charity?

Easy charity check

Look at where the money went

Of every $100 spent, about $92.10 was reported for mission work. Use the spending picture below and ask what results that work produced.

Plain answer: A tax form cannot prove that a charity is doing good. It can show how the charity says it spent its money—and point out questions you should ask.

Basic facts we verified

IRS warning checkNo IRS revocation warning appears in this data.

Money report from 2024The charity has a recent tax report to read.

They explain their jobThe charity tells us what it is trying to do.

They name their leaders12 people are listed in the latest report.

You can reach themThey list contact information, so you can ask questions.

Money made simple

94.55%of revenue went to mission work92.1% of expenses · Program services

2.16%of revenue went to fundraising2.1% of expenses

$102.70spent for every $100 of revenueSpending was higher than revenue this year.

5.99%of revenue went to management and office costs5.8% of expenses

$2.12in assets for every $1 spent this yearSome assets cannot be spent right away.

99.8%of its money came from giftsOther money may come from services or investments.

Ask these three easy questions

Who did you help? Ask for a recent story or report that shows real results.
What will my money do? Ask exactly what your gift will pay for.
Is this really the charity? Give only through its official website or confirmed phone number.

Worth asking: Expenses exceeded revenue by $7,097 this year. Ask whether that was planned or caused by a one-time event.

Bottom line: Do not decide from a name, mission statement, or tax status alone. Look at where the money went, then ask what changed, who was helped, and what your gift will do. YouCanGiveBack does not endorse or grade organizations.

Money

Financial picture

Tax year 2024

A plain-language look at the latest Form 990 figures available. These numbers help you ask better questions; they do not, by themselves, rate whether a charity is good or bad.

$100revenue

How each $100 of revenue was used

The large number compares each expense with revenue. The smaller number shows its share of total expenses.

Total reported revenue$263,173

Mission workProgram services$248,81894.55% of revenue92.1% of expenses

ManagementOffice and general costs$15,7575.99% of revenue5.8% of expenses

FundraisingAsking for donations$5,6952.16% of revenue2.1% of expenses

Total expenses$270,270102.70% of revenue

Expenses were greater than revenue, so the colored ring fills the available $100 and the total above 100% is shown below.

Has the pattern changed?

Colored bars = expense mix: how each year’s expenses were divided. Total expenses vs. revenue shows whether the charity spent less or more than it received. The current filing is first.

YearExpense mixDetails

2024CurrentExpense mix: 92.1% mission · 5.8% management · 2.1% fundraisingTotal expenses: 102.70% of revenue

2023Expense mix: 91.3% mission · 6.1% management · 2.6% fundraisingTotal expenses: 106.20% of revenue

2022Expense mix: 55.0% mission · 34.7% management · 10.4% fundraisingTotal expenses: 17.50% of revenue

2021Expense mix: 80.5% mission · 13.0% management · 6.5% fundraisingTotal expenses: 55.97% of revenue

2020Expense mix: 65.2% mission · 31.6% management · 3.1% fundraisingTotal expenses: 24.74% of revenue

2019Expense mix: 93.7% mission · 5.1% management · 1.3% fundraisingTotal expenses: 75.61% of revenue

Money in and money out

Revenue$263,173

Expenses$270,270

Annual shortfall $7,097 Expenses were higher than revenue for this filing year.

Reported spending amounts

Mission work means the Form 990 category called program services. These are reported accounting categories—not an independent measurement of results.

Mission work (program services)$248,818 · 92.1% of expenses

Management and office costs$15,757 · 5.8% of expenses

Fundraising$5,695 · 2.1% of expenses

See all reported dollar amounts

Revenue$263,173

Expenses$270,270

Assets$573,519

Income$263,173

Contributions$262,702

Mission work (program services)$248,818

Fundraising$5,695

Grants given$248,372

Average grant$31,047

Management and general$15,757

Accounting fees$9,000

People

Leadership and board

Tax year 2024

Names, titles, time, and compensation below are reported by the organization on its Form 990.

No compensation was reported for these leaders. The complete board and leadership roster is shown below.

Board and leadership roster (12)

ALAYNA HAYNAMBOARD MEMBER

ASHLEY POINTPRESIDENT

CINDY ASBURYBOARD MEMBER

EMILY LEMKEBOARD MEMBER

GABRIEL STAGNERTREASURER

JESSICA COLLIERBOARD MEMBER

KACI FISHERBOARD MEMBER

KATIE MAHERBOARD MEMBER

MARIA LUISA VALENTIN DE SOLISBOARD MEMBER

MATT HOLCOMBEBOARD MEMBER

MEGAN HARTWELLBOARD MEMBER

NEAL DERMERERBOARD MEMBER

About this charity

Recognized since: January 2013
Location: 609A PINER ROAD 319, WILMINGTON, NC 28409
County: New Hanover
In care of: GABRIEL STAGNER
Primary officer: GABRIEL STAGNER, TREASURER

How to reach them

WebsiteVisit the charity’s website Phone(833) 731-5387

Filing and classification

Latest tax year: 2024
Tax period began: January 1, 2024
Return type: 990
Tax preparer: MRM TAX AND CONSULTING LLC
NTEE classification: Specifically Named Diseases (G80)
IRS tax category: Specifically Named Diseases
Grant-giving organization: Yes