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.
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.
Focus Areas
Open Grants
6 open opportunities from Kabuki Syndrome Foundation
Ad Hoc Research Funding / Letter of Intent (LOI) Program
Kabuki Syndrome Foundation
Amount
Varies
Deadline
Rolling / Open
Discovery Grant
Kabuki Syndrome Foundation
Amount
$150,000
Deadline
Rolling / Open
Recent Ad Hoc Grant: Identifying new treatments for Kabuki syndrome type 2
Kabuki Syndrome Foundation
Amount
$66,500
Deadline
Rolling / Open
Ready to take the next step with Kabuki Syndrome Foundation?
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of all 3 itemized 2024 grant dollars.
Cities
Giving Over Time
Total grant dollars and number of grants per year
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
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%).
Giving History
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 |
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| 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
- 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.
Here's the math on researching Kabuki Syndrome Foundation by hand.
Explore Open Grants
Browse active grant opportunities in Kabuki Syndrome Foundation's focus areas in our free grants database
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