Kabuki Syndrome Foundation logo

Kabuki Syndrome Foundation

Grantmaker Northbrook, IL EIN: 82-5401904 Website

To drive research efforts that show promise to treat or cure kabuki syndrome through fundraising, knowledge-sharing, and collaborating with researchers around the world.

Key facts about Kabuki Syndrome Foundation

In short: Kabuki Syndrome Foundation gave $239K across 3 grants in 2024 (avg $80K), top state Maryland. Source: 2024 IRS Form 990 filing.

EIN
82-5401904
Latest 990 filing
Form 990 filing, 2024
Annual giving (2024)
$239,393
Grants made (2024)
3
Average grant
$79,798
Median grant
$101,378
Total assets
$2,302,196
Primary geography
Maryland (46% of itemized 2024 grant dollars)

Data from IRS Form 990 filing, 2024; updated September 2026.

Financial Overview

From 2024 IRS Form 990 filing · View filing

Total Assets

$2.3M

+12.2% YoY

Annual Giving

$239K

+2.5% YoY

Grant Count

3

+50.0% YoY

Avg Grant Size

$80K

-31.7% YoY

About Kabuki Syndrome Foundation

Based on IRS filings

Kabuki Syndrome Foundation is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in Northbrook, IL. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $2.3M in total assets. In 2024, it awarded 3 grants totaling $239K. Net investment income was $54K.

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Geographic Focus

Where this funder awards grants

Grant Distribution by State

3states

Share of all 3 itemized 2024 grant dollars.

Cities

BaltimoreBostonSeattle

Giving Over Time

Total grant dollars and number of grants per year

$0$100K$200K$300K0 grants20200 grants20210 grants20222 grants20233 grants2024

From 2023 to 2024, annual grant giving ranged from $234K (2023) to $239K (2024). In 2024 it made 3 grants totaling $239K.

Grant Insights

How this funder distributes its grants

Top Recipients

Top 3 recipients in 2024

Kennedy Krieger Institute: $109KKennedy Krieger Institute$109KBoston Childrens Hospital: $101KBoston Childrens Hospital$101KSeattle Children's Hospital: $29KSeattle Children's Hospital$29K

The largest 2024 recipient was Kennedy Krieger Institute ($109K). Together the top 3 received $239K.

Grant Size Distribution

5 grants across all recorded years

1<$50K1$50–100K3$100–250K$250–500K$500K–1M$1–5M$5M+

The most common grant size was in the $100–250K range: 3 grants of 5 (60%).

Giving History

Grant recipients and amounts by year

RecipientPurposeAmount
Kennedy Krieger Institute Baltimore, MDKabuki Syndrome Research$109,290
Boston Childrens Hospital Boston, MAKabuki Syndrome Research$101,378
Seattle Children's Hospital Seattle, WAKabuki Syndrome Research$28,725

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Net Investment Income
$0$1M$2M$3M20202021202220232024
Metric202420232022
Total Assets$2,302,196$2,051,432$482,449
Revenue$1,238,474$2,062,718$362,899
Expenses$928,828$600,490$236,797
Qualifying Distributions———
Net Investment Income$53,858$5,250—
Distributable Amount———

Data update history

When this profile's IRS filing data changed on Grantable

  1. IRS filings on file for fiscal years 2020–2024

Leadership & Key People

Officers and directors from IRS filings

Kabuki Syndrome Foundation is led by Annie Dean, Co-President on every filing since 2020; none of the 7 officers listed in 2024 report compensation.

Officers on the 2024 filing

  • Annie Dean

    Co-President

    On filings since 2020

    1 hr/week

    No compensation reported

  • Jill Orum Dunbar

    Co-President

    On filings since 2020

    1 hr/week

    No compensation reported

  • Jessica McAndrew

    Director

    New on the 2024 filing

    1 hr/week

    No compensation reported

  • Edoardo Zegna Di Monte Rubello

    Vice President

    On filings since 2020

    1 hr/week

    No compensation reported

  • Leila Zegna Di Monte Rubello

    Vice President

    On filings since 2020

    1 hr/week

    No compensation reported

  • Patrick Dunbar

    Treasurer

    Vice President → Treasurer, 2022

    On filings since 2020

    1 hr/week

    No compensation reported

  • Thomas Cingari Jr.

    Vice President

    On filings since 2020

    1 hr/week

    No compensation reported

Data from IRS Form 990 filings, 2020–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.

Frequently asked questions about Kabuki Syndrome Foundation

How much does Kabuki Syndrome Foundation give each year?

Kabuki Syndrome Foundation gave $239K across 3 grants in 2024, according to its 2024 IRS Form 990 filing. In 2023 it gave $234K across 2 grants.

What is Kabuki Syndrome Foundation's typical grant size?

Kabuki Syndrome Foundation's median grant in 2024 was $101,378, and its average grant was $79,798, across 3 grants on its 2024 IRS Form 990 filing.

Where does Kabuki Syndrome Foundation give grants?

Kabuki Syndrome Foundation's top state is Maryland, with 46% of the grant dollars itemized on its 2024 IRS Form 990 filing. The next largest states were Massachusetts (42%) and Washington (12%).

Does Kabuki Syndrome Foundation give general operating support?

Not in 2024: none of the 3 grants with a stated purpose on Kabuki Syndrome Foundation's 2024 IRS Form 990 filing were described as general or operating support. Recurring purposes include "Kabuki Syndrome Research" (3 grants).

How large is Kabuki Syndrome Foundation?

Kabuki Syndrome Foundation reported $2.3M in total assets on its 2024 IRS Form 990 filing. Its revenue that year was $1.2M.

What is Kabuki Syndrome Foundation?

Kabuki Syndrome Foundation is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in Northbrook, IL. It holds $2.3M in total assets as of 2024.

What is Kabuki Syndrome Foundation's EIN?

Kabuki Syndrome Foundation's EIN (Employer Identification Number) is 82-5401904. IRS Form 990 filing data is available on this page for 2020–2024.

Data last updated September 2026. Sourced from IRS Form 990 filings.

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