Alagille Syndrome Alliance
Mobilize resources, facilitate connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people living with alagille syndrome.
Alagille Syndrome Alliance at a glance
- Total assets
- $700,366
- +9.4% vs 2024
- Revenue (2025)
- $1,165,369
- +79.8% vs 2024
- Net investment income (2025)
- $-214
- -100.5% vs 2024
- Expenses (2025)
- $1,104,074
- +115.4% vs 2024
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
How to apply to Alagille Syndrome Alliance
Open Grants
7 open opportunities from Alagille Syndrome Alliance
ALGSA Research Grant Program
Alagille Syndrome Alliance
Amount
Up to $5,000 for one year
Deadline
Deadline not published
ALGSA Research Grant Program
Alagille Syndrome Alliance
Amount
$5,000
Deadline
Deadline not published
ALGSAccess Program - General Support
Alagille Syndrome Alliance
Amount
Varies
Deadline
Rolling (quarterly review)
Who Alagille Syndrome Alliance funds
How this funder distributes its grants
Grant Size Distribution
2 grants across all recorded years
The most common grant size was in the $50–100K range: 2 grants of 2 (100%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
How Alagille Syndrome Alliance gives
- Giving grew 114% from 2020 to 2023. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2018 to 2023, annual grant giving ranged from $5K (2019) to $75K (2023). In 2023 it made 1 grant totaling $75K.
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 |
|---|---|---|
| Leland Stanford Junior University Redwood, CA | Alagille Cure Resear | $75,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $700,366 | $1,165,369 | $1,104,074 | — | — | $-214 |
| 2024 | $640,163 | $647,970 | $512,614 | — | — | $43,403 |
| 2023 | $501,551 | $571,645 | $539,670 | $75,000 | 1 | $16,252 |
| 2022 | $468,720 | $585,146 | $554,545 | $75,000 | 1 | $-2,097 |
| 2021 | $436,833 | $414,469 | $276,866 | — | — | $10,522 |
| 2020 | $286,569 | $258,130 | $234,277 | $35,000 | 1 | — |
| 2019 | $251,504 | $344,094 | $292,715 | $5,000 | Total only | $8,021 |
| 2018 | $214,024 | $169,326 | $231,156 | $11,745 | 1 | $171 |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
About Alagille Syndrome Alliance
Based on IRS filings
Alagille Syndrome Alliance is a public charity focused on Medical Research, based in Washington, DC. IRS filing data is available from 2018 through 2025. As of 2025, the organization holds $700K in total assets.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Alagille Syndrome Alliance is led by Roberta Smith, President on every filing since 2018; 1 of 6 officers listed in 2025 is compensated.
Officers on the 2025 filing
Roberta Smith
President
On filings since 2018
40 hrs/week
$37K (2019) → $128K (2025)
Julia Bird
Chairman
Director → Chairman, 2023
On filings since 2018
2 hrs/week
No compensation reported
Mike Larosa
Director
On filings since 2018
2 hrs/week
No compensation reported
Shamy Ravishankar
Director
On filings since 2018
2 hrs/week
No compensation reported
Sean Kelly
Director
On filings since 2023
2 hrs/week
No compensation reported
Todd Allen
Treasurer
On filings since 2020
10 hrs/week
No compensation reported
Former officers (4)
- Former: Chris Halloran (2021) — Director
- Former: Cher Bork (2018–2020) — Executive Director
- Former: Marquis Walker (2018–2019) — Treasurer
- Former: Cindy Luxhoj (2018) — Co-Executive Director
Data from IRS Form 990 filings, 2018–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $128K, to Roberta Smith (President).
Frequently asked questions about Alagille Syndrome Alliance
How large is Alagille Syndrome Alliance?
Alagille Syndrome Alliance reported $700K in total assets on its 2025 IRS Form 990. Its revenue that year was $1.2M.
What is Alagille Syndrome Alliance?
Alagille Syndrome Alliance is a public charity focused on Medical Research, based in Washington, DC. It holds $700K in total assets as of 2025.
Where does Alagille Syndrome Alliance operate?
Alagille Syndrome Alliance has awarded grants in California, Pennsylvania.
What is Alagille Syndrome Alliance's EIN?
Alagille Syndrome Alliance's EIN (Employer Identification Number) is 93-1243619. IRS Form 990 filing data is available on this page for 2018–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(4)
When this profile's IRS filing data changed on Grantable
- Added Form 990 for fiscal year 2018 (received by the IRS April 13, 2021)
- Added Form 990 for fiscal year 2019 (received by the IRS May 12, 2020)
- Added Form 990 for fiscal year 2025 (received by the IRS July 15, 2026)
- IRS filings on file for fiscal years 2020–2024
Explore Open Grants
Browse active grant opportunities in Alagille Syndrome Alliance's focus areas in our free grants database
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Alagille Syndrome Alliance down — hundreds of funders to go?