Osteogenesis Imperfecta Foundation
Our mission is to improve the quality of life for people affected by oi through research to find treatments and a cure, education, awareness, and mutual support. There are at least four distinct forms of osteogenesis imperfecta representing extreme variations in severity and affecting 20,000 to 40,000 people in the united states.
Osteogenesis Imperfecta Foundation at a glance
In short: Osteogenesis Imperfecta Foundation gave $125K across 3 grants in 2025 (avg $42K), top state California. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $125,000
- -16.7% vs 2024
- Grants made (2025)
- 3
- -25.0% vs 2024
- Average grant
- $41,667
- +11.1% vs 2024
- Median grant
- $50,000
- Total assets
- $1,660,457
- -21.9% vs 2024
- Primary geography
- California (40% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who Osteogenesis Imperfecta Foundation funds
How this funder distributes its grants
Top Recipients
Top 3 recipients in 2025
The largest 2025 recipient was The Regents of the University California Los Angeles ($50K). Together the top 3 received $125K.
Grant Size Distribution
26 grants across all recorded years
The most common grant size was in the $50–100K range: 13 grants of 26 (50%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 3 itemized grants.
States
Cities
How Osteogenesis Imperfecta Foundation gives
- Giving fell 73% from 2022 to 2025. 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 2025, annual grant giving ranged from $96K (2020) to $470K (2022). In 2025 it made 3 grants totaling $125K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| The Regents of the University California Los Angeles Los Angeles, CA | Fellowship Grant | $50,000 |
| Boston Children's Hospital Boston, MA | Fellowship Grant | $50,000 |
| University of South Florida Tampa, FL | Contact Registry | $25,000 |
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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 | $1,660,457 | $2,607,851 | $2,627,305 | $125,000 | 3 | $309,216 |
| 2024 | $2,125,391 | $2,271,920 | $2,451,085 | $150,000 | 4 | $57,062 |
| 2023 | $2,346,165 | $2,214,512 | $2,085,298 | $244,940 | 5 | $50,847 |
| 2022 | $2,054,090 | $2,112,061 | $2,287,948 | $470,110 | 10 | $234,313 |
| 2021 | $2,230,527 | $1,897,607 | $1,624,284 | $179,673 | 4 | $42,930 |
| 2020 | $1,745,584 | $1,544,189 | $1,643,730 | $95,982 | 3 | $62,157 |
| 2019 | $1,768,258 | $1,835,341 | $2,109,750 | $278,315 | 8 | $177,183 |
About Osteogenesis Imperfecta Foundation
Based on IRS filings
Osteogenesis Imperfecta Foundation is a public charity focused on Medical Research, based in Gaithersburg, MD. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $1.7M in total assets. In 2025, it awarded 3 grants totaling $125K. Net investment income was $309K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Osteogenesis Imperfecta Foundation is led by Tracy Smith Hart, Chief Executive Officer on every filing since 2019; 2 of 17 officers listed in 2025 are compensated.
Officers on the 2025 filing
Tracy Smith Hart
Chief Executive Officer
On filings since 2019
40 hrs/week
$183K (2019) → $215K (2025)
Christine Wyman Rossi
President
Secretary → Vice President, 2021
Vice President → President, 2025
On filings since 2019
2 hrs/week
No compensation reported
Katherine E. Carter
Chief Program Officer
On filings since 2022
40 hrs/week
$117K (2022) → $136K (2025)
Kara B. Ayers
Vice President
Secretary → Vice President, 2020
On filings since 2019
2 hrs/week
No compensation reported
Kenneth Finkel
Vice President
Board Member → Secretary, 2022
Secretary → Vice President, 2024
On filings since 2020
2 hrs/week
No compensation reported
Michael Sheridan
Board Member
On filings since 2021
2 hrs/week
No compensation reported
Wendy E. Sacks
Board Member
On filings since 2021
2 hrs/week
No compensation reported
James Sharples
Treasurer
Board Member → Treasurer, 2025
On filings since 2022
2 hrs/week
No compensation reported
Karen Braitmayer
Secretary
Board Member → Secretary, 2025
On filings since 2022
2 hrs/week
No compensation reported
Michelle Fynan
Vice President
Board Member → Secretary, 2024
Secretary → Vice President, 2025
On filings since 2022
2 hrs/week
No compensation reported
V. Reid Sutton
Board Member
On filings since 2022
2 hrs/week
No compensation reported
Billy Huang
Board Member
On filings since 2023
2 hrs/week
No compensation reported
Cindy Medina
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Emily F. Voorde
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Julie Hocker
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Scott Walls
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Tony Jacobsen
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Former officers (17)
- Former: Sharon Mutnick (2019–2024) — Treasurer
- Former: Ted Trahan (2019–2024) — President
- Former: Francis Glorieux (2020–2024) — Foundation Member
- Former: S. Jacinta Whyte (2019–2023) — Board Member
- Former: James M. Early (2020–2023) — Vice President
- Former: Tracy L. Mulroy (2021–2023) — Board Member
- Former: Cameron R. Penn (2019–2022) — Previous President
- Former: Brett Eisenberg (2019–2021) — Board Member
- Former: Eric Gould (2019–2021) — Board Member
- Former: Joe Hall (2019–2021) — Board Member
- Former: Laura Tosi (2019–2021) — Board Member
- Former: Michele Burka (2019–2021) — Board Member
- Former: Erika Carter (2021) — Chief Program Officer
- Former: Kenneth W. Gudek Sr. (2019–2020) — Immediate Past President
- Former: Francis Glorieux Oc MD PhD (2019) — Chairman - Medical Advisory Committee
- Former: Ken Finkel (2019) — Board Member
- Former: Marcial T. Costanzo (2019) — Director of Finance
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 $215K, to Tracy Smith Hart (Chief Executive Officer). 2 officers or directors reported compensation on that filing.
Frequently asked questions about Osteogenesis Imperfecta Foundation
How much does Osteogenesis Imperfecta Foundation give each year?
Osteogenesis Imperfecta Foundation gave $125K across 3 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $150K across 4 grants.
What is Osteogenesis Imperfecta Foundation's typical grant size?
Osteogenesis Imperfecta Foundation's median grant in 2025 was $50,000, and its average grant was $41,667, across 3 grants on its 2025 IRS Form 990.
Where does Osteogenesis Imperfecta Foundation give grants?
Osteogenesis Imperfecta Foundation's top state is California, with 40% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were Massachusetts (40%) and Florida (20%).
Does Osteogenesis Imperfecta Foundation give general operating support?
Not in 2025: none of the 3 grants with a stated purpose on Osteogenesis Imperfecta Foundation's 2025 IRS Form 990 were described as general or operating support.
How large is Osteogenesis Imperfecta Foundation?
Osteogenesis Imperfecta Foundation reported $1.7M in total assets on its 2025 IRS Form 990. Its revenue that year was $2.6M.
What is Osteogenesis Imperfecta Foundation?
Osteogenesis Imperfecta Foundation is a public charity focused on Medical Research, based in Gaithersburg, MD. It holds $1.7M in total assets as of 2025.
What is Osteogenesis Imperfecta Foundation's EIN?
Osteogenesis Imperfecta Foundation's EIN (Employer Identification Number) is 23-7076021. 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
(8)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2019 (received by the IRS April 9, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS March 1, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS January 12, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS January 12, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS February 14, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS February 12, 2025)
- Updated Form 990 for fiscal year 2025 (received by the IRS March 2, 2026)
- IRS filings on file for fiscal years 2019–2025
Live grants for the work Osteogenesis Imperfecta Foundation funds
Medical Research Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Osteogenesis Imperfecta Foundation's focus areas in our free grants database
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