The Fibrous Dysplasia Foundation
The Fibrous Dysplasia Foundation serves people affected with fibrous dysplasia/mccune-albright syndrome through programs of research, education, awareness and support.
The Fibrous Dysplasia Foundation at a glance
- Total assets
- $243,546
- -8.9% vs 2024
- Revenue (2025)
- $245,764
- -23.9% vs 2024
- Net investment income (2025)
- $6,958
- +22.5% vs 2024
- Expenses (2025)
- $270,098
- -30.4% vs 2024
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who The Fibrous Dysplasia Foundation funds
How this funder distributes its grants
Grant Size Distribution
4 grants across all recorded years
The most common grant size was in the $100–250K range: 3 grants of 4 (75%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
How The Fibrous Dysplasia Foundation gives
- Giving fell 47% 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 2019 to 2024, annual grant giving ranged from $38K (2020) to $123K (2022). In 2024 it made 1 grant totaling $54K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Trustees of Upenn Philadelphia, PA | — | $53,673 |
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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 | $243,546 | $245,764 | $270,098 | — | — | $6,958 |
| 2024 | $267,364 | $322,942 | $388,138 | $53,673 | 1 | $5,682 |
| 2023 | $329,399 | $282,768 | $377,909 | $109,247 | 1 | $134 |
| 2022 | $427,498 | $397,986 | $376,503 | $122,825 | 1 | $141 |
| 2021 | $421,680 | $395,077 | $350,971 | $100,353 | 1 | $117 |
| 2020 | $269,119 | $245,035 | $223,636 | $37,603 | 1 | $19 |
| 2019 | $158,006 | $210,770 | $295,962 | $66,419 | 1 | $24 |
About The Fibrous Dysplasia Foundation
Based on IRS filings
The Fibrous Dysplasia Foundation is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Bethesda, MD. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $244K in total assets. Net investment income was $7K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
The Fibrous Dysplasia Foundation is led by Anne Corvelle, Board President since 2023 (on filings since 2020); 1 of 11 officers listed in 2025 is compensated.
Officers on the 2025 filing
Anne Corvelle
Board President
Director → Board President, 2023
On filings since 2020
2 hrs/week
No compensation reported
Gary Pollastro
Director
On filings since 2020
0.5 hrs/week
No compensation reported
Carmel Shemmesh-Rafalowsky
Director
On filings since 2023
0.5 hrs/week
No compensation reported
Justin Healy
Director
On filings since 2023
0.5 hrs/week
No compensation reported
Eric Chien-Wei Liao
Director
On filings since 2024
0.5 hrs/week
No compensation reported
Justin Cohen
Director
On filings since 2024
0.5 hrs/week
No compensation reported
Michael Collins
Director
New on the 2025 filing
0.5 hrs/week
No compensation reported
Adrienne McBride
Executive Di
On filings since 2021
40 hrs/week
$80K (2021) → $89K (2025)
Cindi Brandt Levin
Board Vice P
Vice President → Board Vice P, 2021
On filings since 2019
2 hrs/week
No compensation reported
Malissa Kenney
Secretary
On filings since 2020
2 hrs/week
No compensation reported
Christopher Guest
Treasurer
New on the 2025 filing
2 hrs/week
No compensation reported
Former officers (19)
- Former: Lauren Ruotolo (2019–2024) — Director
- Former: Nicola Deeley (2023–2024) — Director
- Former: Chris Guest (2024) — Treasurer
- Former: Lynn Lindaman (2019–2023) — Director
- Former: Carrie Nawrocki (2020–2023) — Director
- Former: Leslie Martin (2023) — Director
- Former: Jocelyn Pederson (2019–2022) — Director
- Former: Joyce Ellis (2019–2022) — Director
- Former: Leah Surprise (2019–2022) — Director
- Former: Sarah Healy (2019–2022) — Director
- Former: Jessica Barrett (2020–2022) — Director
- Former: Jim Rae (2020–2022) — Treasurer
- Former: Kiran Yarlagadda (2020–2022) — Director
- Former: Lauren Cox Foster (2020–2022) — Director
- Former: Jack Kelly (2019) — Secretary
- Former: Kathy Crews (2019) — Director
- Former: Kiran Murty (2019) — Director
- Former: Lauren Cox (2019) — Director
- Former: Suzanne Barnicle (2019) — Treasurer
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 $89K, to Adrienne McBride (Executive Di).
Frequently asked questions about The Fibrous Dysplasia Foundation
How large is The Fibrous Dysplasia Foundation?
The Fibrous Dysplasia Foundation reported $244K in total assets on its 2025 IRS Form 990. Its revenue that year was $246K.
What is The Fibrous Dysplasia Foundation?
The Fibrous Dysplasia Foundation is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Bethesda, MD. It holds $244K in total assets as of 2025.
Where does The Fibrous Dysplasia Foundation operate?
The Fibrous Dysplasia Foundation has awarded grants in Pennsylvania.
What is The Fibrous Dysplasia Foundation's EIN?
The Fibrous Dysplasia Foundation's EIN (Employer Identification Number) is 02-0715210. 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
(7)
When this profile's IRS filing data changed on Grantable
- Added Form 990 for fiscal year 2019 (received by the IRS March 4, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS May 15, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS May 2, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 9, 2022)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 14, 2023)
- Updated Form 990 for fiscal year 2024 (received by the IRS November 13, 2024)
- IRS filings on file for fiscal years 2020–2025
Live grants for the work The Fibrous Dysplasia Foundation funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in The Fibrous Dysplasia Foundation's focus areas in our free grants database
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