Lymphangiomatosis & Gorhams Disease Alliance Inc
Lymphangiomatosis & Gorhams Disease Alliance Inc is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Saint Petersburg, FL. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $354K in total assets.
Lymphangiomatosis & Gorhams Disease Alliance Inc at a glance
- Total assets
- $353,825
- -8.4% vs 2024
- Revenue (2025)
- $118,890
- -56.1% vs 2024
- Expenses (2025)
- $153,100
- -50.7% vs 2024
- Latest 990 filing
- Form 990-EZ, 2025 View filing
Data from IRS Form 990-EZ, 2025; updated September 2026.
Who Lymphangiomatosis & Gorhams Disease Alliance Inc funds
How this funder distributes its grants
Grant Size Distribution
6 grants across all recorded years
The most common grant size was under $50K: 6 grants of 6 (100%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
How Lymphangiomatosis & Gorhams Disease Alliance Inc gives
- Giving grew 105% from 2021 to 2024. 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 2020 to 2024, annual grant giving ranged from $11K (2020) to $76K (2024). In 2024 it made 3 grants totaling $76K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Pennsylvania Trustees Philadelphia, PA | General Support. | $30,882 |
| Lymphatic Malformation Institute Bethesda, MD | General Support. | $25,000 |
| Children's Hospital of Philadelphia Philadelphia, PA | General Support. | $20,000 |
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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 | $353,825 | $118,890 | $153,100 | — | — | — |
| 2024 | $386,253 | $271,042 | $310,725 | $75,882 | 3 | $5,655 |
| 2023 | $421,865 | $121,403 | $280,940 | — | — | — |
| 2022 | $579,142 | $321,718 | $319,777 | $26,200 | 1 | $843 |
| 2021 | $662,607 | $323,008 | $211,390 | $37,000 | 2 | $1,749 |
| 2020 | $552,913 | $320,054 | $106,049 | $11,180 | 1 | $4,316 |
| 2019 | $346,747 | $123,025 | $131,666 | — | — | — |
Leadership & Key People
Officers and directors from IRS filings
Lymphangiomatosis & Gorhams Disease Alliance Inc is led by Michael Kelly, Executive Director on every filing since 2021; 2 of 10 officers listed in 2025 are compensated.
Officers on the 2025 filing
Michael Kelly
Executive Director
On filings since 2021
20 hrs/week
$56K (2022) → $3K (2025)
Scott Weisner
President
Chariman → Chairman, 2021
Chairman → President, 2022
On filings since 2019
2 hrs/week
No compensation reported
Louise Murgia
Director of Operations
On filings since 2023
40 hrs/week
$47K (2023) → $65K (2025)
Mitch Maersch
Board Member
Director → Board Member, 2022
On filings since 2019
2 hrs/week
No compensation reported
Scott Goldfarb
Treasurer
Director → Board Member, 2022
Board Member → Treasurer, 2025
On filings since 2019
2 hrs/week
No compensation reported
Tiffany Ferry
Board Member
Director → Board Member, 2022
On filings since 2019
2 hrs/week
No compensation reported
Kevin Martin
Board Member
On filings since 2024
2 hrs/week
No compensation reported
Sean Chastain
Board Member
On filings since 2024
2 hrs/week
No compensation reported
Ofelia Rodriguez Nievas
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Samira Farouni
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Former officers (6)
- Former: Ange van der Velden (2020) — Director
- Former: Jack Kelly (2020) — President & Acting Secretary
- Former: Allan Gammon (2019) — Director
- Former: John Kelly (2019) — President & Acting Secretary
- Former: Lisa Klepper (2019) — Director
- Former: Sandra Goldfarb (2019) — Vice President
Data from IRS Form 990 filings, 2019–2025. "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 $65K, to Louise Murgia (Director of Operations). 2 officers or directors reported compensation on that filing.
Frequently asked questions about Lymphangiomatosis & Gorhams Disease Alliance Inc
How large is Lymphangiomatosis & Gorhams Disease Alliance Inc?
Lymphangiomatosis & Gorhams Disease Alliance Inc reported $354K in total assets on its 2025 IRS Form 990-EZ. Its revenue that year was $119K.
What is Lymphangiomatosis & Gorhams Disease Alliance Inc?
Lymphangiomatosis & Gorhams Disease Alliance Inc is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Saint Petersburg, FL. It holds $354K in total assets as of 2025.
Where does Lymphangiomatosis & Gorhams Disease Alliance Inc operate?
Lymphangiomatosis & Gorhams Disease Alliance Inc has awarded grants in Maryland, Oregon, Pennsylvania.
What is Lymphangiomatosis & Gorhams Disease Alliance Inc's EIN?
Lymphangiomatosis & Gorhams Disease Alliance Inc's EIN (Employer Identification Number) is 26-1224181. IRS Form 990 filing data is available on this page for 2019–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(6)
When this profile's IRS filing data changed on Grantable
- Added Form 990-EZ for fiscal year 2019 (received by the IRS January 9, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS February 23, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS November 9, 2021)
- Updated Form 990 for fiscal year 2022 (received by the IRS May 15, 2023)
- Updated Form 990 for fiscal year 2024 (received by the IRS November 18, 2024)
- IRS filings on file for fiscal years 2020–2025
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