Nonprofit · EIN 93-1243619
ALAGILLE SYNDROME ALLIANCE
Tax-exempt · WASHINGTON, DC 20005
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $1,165,369 | $1,104,074 | $61,295 | $700,366 | $4,944 | $695,422 |
| December 31, 2024 | 990 (amended) | $647,970 | $512,614 | $135,356 | $640,163 | $6,036 | $634,127 |
| December 31, 2023 | 990 | $571,645 | $539,670 | $31,975 | $501,551 | $2,780 | $498,771 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $1,165,583
- Program service revenue
- $0
- Investment income
- -$214
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $25,926
- Other salaries and wages
- $353,681
- Salaries, compensation and benefits (total)
- $373,811
- Professional fundraising fees
- $0
- Legal fees
- $34,840
- Accounting fees
- $6,650
- Program services (functional)
- $926,821
- Management and general (functional)
- $143,002
- Fundraising (functional)
- $34,251
Balance sheet and other
- Total assets, start of year
- $640,163
- Total assets, end of year
- $700,366
- Total liabilities, end of year
- $4,944
- Net assets, end of year
- $695,422
- Publicly traded securities
- $201,091
- Net assets without donor restrictions
- $668,985
- Net assets with donor restrictions
- $26,437
- Gross receipts
- $1,165,369
- Employees
- 3
- Volunteers
- 15
- Year formed
- 1997
- State of legal domicile
- OR
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| ROBERTA SMITH | PRESIDENT Officer | 40 | $128,322 |
| SEAN KELLY | DIRECTOR Trustee or director | 2 | $0 |
| MIKE LAROSA | DIRECTOR Trustee or director | 2 | $0 |
| SHAMY RAVISHANKAR | DIRECTOR Trustee or director | 2 | $0 |
| TODD ALLEN | TREASURER Officer | 10 | $0 |
| JULIA BIRD | CHAIRMAN Officer | 2 | $0 |
990 for the year ended December 31, 2024: 6 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| ROBERTA SMITH | PRESIDENT Officer | 40 | $130,744 |
| SEAN KELLY | DIRECTOR Trustee or director | 2 | $0 |
| MIKE LAROSA | DIRECTOR Trustee or director | 2 | $0 |
| SHAMY RAVISHANKAR | DIRECTOR Trustee or director | 2 | $0 |
| TODD ALLEN | TREASURER Officer | 10 | $0 |
| JULIA BIRD | CHAIRMAN Officer | 2 | $0 |
990 for the year ended December 31, 2023: 6 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| ROBERTA SMITH | PRESIDENT Officer | 40 | $110,839 |
| SEAN KELLY | DIRECTOR Trustee or director | 2 | $0 |
| MIKE LAROSA | DIRECTOR Trustee or director | 2 | $0 |
| SHAMY RAVISHANKAR | DIRECTOR Trustee or director | 2 | $0 |
| TODD ALLEN | TREASURER Officer | 10 | $0 |
| JULIA BIRD | CHAIRMAN Officer | 2 | $0 |
Address and contacts
- Address (IRS master file)
- 1012 14TH ST NW STE 500, WASHINGTON, DC 20005-3406
- Principal officer (990 for 2025)
- ROBERTA SMITH, 613 E LINCOLN STREET, EAST TAWAS, MI 48730
- Signed the 990
- ROBERTA SMITH, PRESIDENT
- Phone
- (901) 286-8869
- Website
- ALAGILLE.ORG
- Return prepared by
- STEPHENSON & COMPANY PC
Mission
MOBILIZE RESOURCES, FACILITATE CONNECTIONS, PROMOTING UNITY, AND ADVOCATING FOR A CURE TO INSPIRE, EMPOWER, AND ENRICH THE LIVES OF PEOPLE LIVING WITH ALAGILLE SYNDROME.
Program accomplishments
- ALGSA SUMMITExpenses $447,957
- ALGSA SCIENTIFIC RESEARCH NETWORKExpenses $156,148
- ALGSA JR. PROGRAMExpenses $69,870
- VARIOUS OTHER PROGRAMSExpenses $252,846
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 93-1243619
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1998
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Medical research (H41)
- Assets (IRS master file)
- $700,366
- Income (IRS master file)
- $1,165,369
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $1,165,369 | $1,104,074 | $700,366 | XML |
| 990 | December 2024 | $647,970 | $512,614 | $640,163 | IRS |
| 990 | December 2023 | $571,645 | $539,670 | $501,551 | XML |
| 990 | December 2022 | $585,146 | $554,545 | $468,720 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2019 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 93-1243619).
Questions about ALAGILLE SYNDROME ALLIANCE
- What is the EIN of ALAGILLE SYNDROME ALLIANCE?
- The employer identification number (EIN) of ALAGILLE SYNDROME ALLIANCE is 93-1243619.
- Is ALAGILLE SYNDROME ALLIANCE tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1998.
- Are donations to ALAGILLE SYNDROME ALLIANCE tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does ALAGILLE SYNDROME ALLIANCE file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of ALAGILLE SYNDROME ALLIANCE due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did ALAGILLE SYNDROME ALLIANCE last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of ALAGILLE SYNDROME ALLIANCE?
- The 990 for the year ended December 31, 2025 names ROBERTA SMITH.
- Who are the officers and directors of ALAGILLE SYNDROME ALLIANCE?
- The 990 for the year ended December 31, 2025 lists 6 people; 1 received compensation from the organization, the highest $128,322 (ROBERTA SMITH, PRESIDENT).
- How much revenue does ALAGILLE SYNDROME ALLIANCE have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $1,165,369, expenses of $1,104,074 and total assets of $700,366 at year end.
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