Kabuki Syndrome Foundation
To drive research efforts that show promise to treat or cure kabuki syndrome through fundraising, knowledge-sharing, and collaborating with researchers around the world.
Kabuki Syndrome Foundation at a glance
In short: Kabuki Syndrome Foundation gave $239K across 3 grants in 2024 (avg $80K), top state Maryland. Source: 2024 IRS Form 990.
- Annual giving (2024)
- $239,393
- +2.5% vs 2023
- Grants made (2024)
- 3
- +50.0% vs 2023
- Average grant
- $79,798
- -31.7% vs 2023
- Median grant
- $101,378
- Total assets
- $2,302,196
- +12.2% vs 2023
- Primary geography
- Maryland (46% of itemized 2024 grant dollars)
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026.
How to apply to Kabuki Syndrome Foundation
Open Grants
6 open opportunities from Kabuki Syndrome Foundation
Ad Hoc Research Funding / Letter of Intent (LOI) Program
Kabuki Syndrome Foundation
Amount
Varies
Deadline
Deadline not published
Discovery Grant
Kabuki Syndrome Foundation
Amount
$150,000
Deadline
Deadline not published
Recent Ad Hoc Grant: Identifying new treatments for Kabuki syndrome type 2
Kabuki Syndrome Foundation
Amount
$66,500
Deadline
Deadline not published
Who Kabuki Syndrome Foundation funds
How this funder distributes its grants
Top Recipients
Top 3 recipients in 2024
The largest 2024 recipient was Kennedy Krieger Institute ($109K). Together the top 3 received $239K.
Grant Size Distribution
5 grants across all recorded years
The most common grant size was in the $100–250K range: 3 grants of 5 (60%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2024 grant dollars across all 3 itemized grants.
Cities
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2021 to 2024, annual grant giving ranged from $500 (2021) to $239K (2024). In 2024 it made 3 grants totaling $239K.
Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Kennedy Krieger Institute Baltimore, MD | Kabuki Syndrome Research | $109,290 |
| Boston Childrens Hospital Boston, MA | Kabuki Syndrome Research | $101,378 |
| Seattle Children's Hospital Seattle, WA | Kabuki Syndrome Research | $28,725 |
Ready to take the next step with Kabuki Syndrome Foundation?
Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $2,302,196 | $1,238,474 | $928,828 | $239,393 | 3 | $53,858 |
| 2023 | $2,051,432 | $2,062,718 | $600,490 | $233,663 | 2 | $5,250 |
| 2022 | $482,449 | $362,899 | $236,797 | — | — | — |
| 2021 | $356,347 | $412,185 | $68,046 | $500 | Total only | — |
| 2020 | $12,208 | $8,961 | $1,460 | — | — | — |
| 2019 | $4,707 | $4,346 | $4,705 | — | — | — |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
About Kabuki Syndrome Foundation
Based on IRS filings
Kabuki Syndrome Foundation is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Northbrook, IL. IRS filing data is available from 2019 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.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Kabuki Syndrome Foundation is led by Annie Dean, Co-President on every filing since 2019; none of the 7 officers listed in 2024 report compensation.
Officers on the 2024 filing
Annie Dean
Co-President
On filings since 2019
1 hr/week
No compensation reported
Jill Orum Dunbar
Co-President
On filings since 2019
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 2019
1 hr/week
No compensation reported
Leila Zegna Di Monte Rubello
Vice President
On filings since 2019
1 hr/week
No compensation reported
Patrick Dunbar
Treasurer
Vice President → Treasurer, 2022
On filings since 2019
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, 2019–2024. "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. 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.
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. 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 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. Its revenue that year was $1.2M.
What is Kabuki Syndrome Foundation?
Kabuki Syndrome Foundation is a public charity 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 2019–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(5)
When this profile's IRS filing data changed on Grantable
- Added Form 990 for fiscal year 2019 (received by the IRS June 5, 2020)
- Updated Form 990 for fiscal year 2021 (received by the IRS November 14, 2022)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 7, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS November 11, 2025)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work Kabuki Syndrome Foundation funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Kabuki Syndrome Foundation's focus areas in our free grants database
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