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US nonprofit · EIN 463208388 · Wilmington, NCiSource and licenceOrganisation record IRS Exempt Organizations Business Master File (EIN 463208388) - NTEE activity code, address.Board and officers IRS Form 990 annual filings, Part VII (directors, trustees, officers, key employees), read year by year to observe tenure.Latest return IRS Form 990 series e-file data - 990 for the year to 31 December 2025: assets, liabilities, staff, website, telephone, pay.Finances by year IRS Form 990 e-file data - total revenue and total expenses by tax year.Renewal outlook Computed by Governance Register from the observed filing history and filed revenue (us-approach-v4-clean). Not a statement that the organisation is recruiting.Principal officer IRS Form 990-N (e-Postcard) - principal officer named for tax year 2017.Deductibility IRS Publication 78 data (code PC), downloaded 18 October 2026.State registers Colorado Secretary of State (17 October 2026).Licence US Federal Government public domain.How we handle data

Koolen-De Vries Syndrome Foundation

Donations deductible
Revenue
$381k
year to 31 December 2025
Expenses
$220k
year to 31 December 2025
Total assets
$735k
$0 liabilities
Net assets
$735k
assets less liabilities
Directors and trustees
12
4.9y av
Staff
0
employees, year to 31 December 2025
Left since last filing
0
no seats appear to have opened
Voting members
11
reported in Part VI
How am I connected?

Koolen-De Vries Syndrome Foundation's network

12 peoplei12 people on this map.The large node is the subject of this page. Solid lines are what the register itself records (12). Form 990 filings give names without a person identifier; SEC insider filings carry a CIK.

The board

12 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations.Tenure and departures are observed across annual filings. Observed tenure is a lower bound - a member may have joined before the first year on record. The organisation reported 11 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.
NameRole as filedSinceOn the board
Alayna HaynamBoard Member2019
7 yrs
Ashley PointPresident2020
6 yrs
Cindy AsburyBoard Member2022
4 yrs
Emily LemkeBoard Member2022
4 yrs
Gabriel StagnerTreasurer2022
4 yrs
Jessica CollierBoard Member2022
4 yrs
Kaci FisherBoard Member2020
6 yrs
Katie MaherBoard Member2023
3 yrs
Maria Luisa Valentin De SolisBoard Member2022
4 yrs
Matt HolcombeBoard Member2023
3 yrs
Megan HartwellBoard Member2024
2 yrs
Neal DermererBoard Member2019
7 yrs
Under 5 years5 to 6 years6 years or moreShow all 12 →

Pay and hours

year to 31 December 2025iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.
NameTitle as filedHours a weekPay from the organisationRelated organisationsOther
Alayna HaynamBoard Member1$0
Ashley PointPresident10$0
Cindy AsburyBoard Member1$0
Emily LemkeBoard Member2$0
Gabriel StagnerTreasurer5$0
Jessica CollierBoard Member5$0
Kaci FisherBoard Member5$0
Maria Luisa Valentin de SolisBoard Member1$0
Katie MaherBoard Member2$0
Matt HolcombeBoard Member1$0
Megan HartwellBoard Member2$0

No pay was reported for anyone in Part VII on this return.

Colorado roster

12 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20263022806). Titles are as filed; some entries are registered agents or custodians of records rather than board members. Source: data.colorado.gov, public domain.
NameTitle as filed
Katie MaherBoard Member
Kaci FisherBoard Member
Maria Luisa Valentin de SolisBoard Member
Cindy AshburyBoard Member
Ashley PointPresident
Gabe StagnerTreasurer
Matt HolcombeBoard Member
Alayna HaynamBoard Member
Jess CollierBoard Member
Emily LemkeBoard Member
Neal DeremerBoard Member
Gabe Stagner

About

Legal name
Koolen-de Vries Syndrome Foundation
EIN
463208388
Address
609a Piner Road 319, Wilmington, NC, 28409-4201
State
North Carolina
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... (as filed on the Form 990)
Activity (NTEE)
G80 Voluntary health associations and medical disciplines
IRS classification
501(c)03 (tax-exempt under section 501(c)(3) where shown)
Classified purpose
Voluntary Health Associations & Medical Disciplines
Size band
5 (IRS master file code)
Formed
2013
Principal officer
Gabriel Stagner (as named on the Form 990)
IRS ruling date
1 December 2013
Status
Code 01 (unconditional exemption)
Form 990 filings on record
5, latest 2024
IRS Publication 78
PC (contributions deductible)

Most connected

Longest observed on the filings

≥7years on the filingsAlayna Haynam
≥7years on the filingsNeal Dermerer
≥6years on the filingsAshley Point
≥6years on the filingsKaci Fisher

Latest return

year to 31 December 2025iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2025. US dollars, as filed.
Total assets
$735k
Total liabilities
$0
Net assets or fund balances
$735k
Contributions and grants received
$324k
Program service revenue
$52k
Employees
0

Filed finances

1 yeariTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.
Tax yearTotal revenueTotal expensesSurplus or deficit
2024$263k$270kDeficit $7k

As filed on the IRS Form 990. US dollars.

State registration

1 entityiBusiness-entity registers published by US states. These records are matched to this organisation by name and state, not by EIN, and are labelled as likely matches. Street addresses are not shown.
Koolen-de Vries Syndrome Foundation likely matchiMatched by exact name and state (and ZIP where shown). State registers do not publish EINs, so this is not a confirmed match. Source: Colorado Secretary of State (CDOS), business entities (data.colorado.gov 4ykn-tg5h). Licence: public domain. Data last fetched 18 October 2026.
State
Colorado
Entity type
nonprofit corporation
Status
Good Standing
Formed
2 December 2020
Registered agent
Incorp Services, Inc. (city and state not held)

This register does not publish officers or directors.