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Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2023
Total Revenue
▼$2.3M
Program Spending
77%
of total expenses go to program services
Total Contributions
$2.1M
Total Expenses
▼$2.5M
Total Assets
$2.1M
Total Liabilities
▼$547.5K
Net Assets
$1.6M
Officer Compensation
→$257.4K
Other Salaries
$741.1K
Investment Income
$57.1K
Fundraising
▼$225.4K
Source: USAspending.gov · Searched by organization name
Total Federal Funding
$110K
Awards Found
4
| Awarding Agency | Description | Amount | Fiscal Year | Period |
|---|---|---|---|---|
| Department of Health and Human Services | MECHANISTIC AND THERAPEUTIC ADVANCES IN RARE SKELETAL DISEASE | $35K | FY2018 | Sep 2018 – Aug 2019 |
| Department of Health and Human Services | ASSESSING THE IMPACT OF OSTEOGENESIS IMPERFECTA ON NON-SKELETAL SYSTEMS | $25K | FY2012 | Apr 2012 – Mar 2013 |
| Department of Health and Human Services | IMPROVING MUSCULOSKELETAL OUTCOMES FOR INDIVIDUALS WITH OSTEOGENESIS IMPERFECTA | $25K | FY2010 | Mar 2010 – Feb 2011 |
| Department of Health and Human Services | THE CHALLENGES OF AUTOSOMAL RECESSIVE AND OTHER NEW FORMS OF OI | $25K | FY2008 | Apr 2008 – Sep 2008 |
Department of Health and Human Services
$35K
MECHANISTIC AND THERAPEUTIC ADVANCES IN RARE SKELETAL DISEASE
Department of Health and Human Services
$25K
ASSESSING THE IMPACT OF OSTEOGENESIS IMPERFECTA ON NON-SKELETAL SYSTEMS
Department of Health and Human Services
$25K
IMPROVING MUSCULOSKELETAL OUTCOMES FOR INDIVIDUALS WITH OSTEOGENESIS IMPERFECTA
Department of Health and Human Services
$25K
THE CHALLENGES OF AUTOSOMAL RECESSIVE AND OTHER NEW FORMS OF OI
Source: Federal Audit Clearinghouse (fac.gov)
No federal single audit records found for this organization.
Single audits are required for entities expending $750,000+ in federal awards annually.
Tax Year 2024 · Source: IRS e-Filed Form 990
Individuals serving as officers, directors, or trustees of the organization.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other |
|---|
Source: IRS Publication 78, Auto-Revocation List & e-Postcard Data
Tax-deductible contributions: Yes
Deductibility code: PC
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2023IRS e-File | $2.3M | $2.1M | $2.5M | $2.1M | $1.6M |
| 2022 | $2.1M | $2M | $2.3M | $2.1M | $1.5M |
| 2021 | $1.9M | $1.9M | $1.6M | $2.2M | $2M |
| 2020 | $1.5M | $1.5M | $1.6M |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
Financial data: IRS e-Filed Form 990 (Tax Year 2023)
Leadership & compensation: IRS e-Filed Form 990, Part VII (Tax Year 2024)
Federal grants: USAspending.gov (live)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Tracy Smith Hart | Chief Executive Officer | 40 | $200.5K | $0 | $27.4K | $227.9K |
| Christine Wyman Rossi | Vice President | 2 | $0 | $0 | $0 | $0 |
| Sharon Mutnick | Treasurer | 2 | $0 | $0 | $0 | $0 |
| Michelle Fynan | Secretary | 2 | $0 | $0 | $0 | $0 |
| Francis Glorieux | Foundation Member | 2 | $0 | $0 | $0 | $0 |
| Ted Trahan | President | 2 | $0 | $0 | $0 | $0 |
| Kenneth Finkel | Vice President | 2 | $0 | $0 | $0 | $0 |
Tracy Smith Hart
Chief Executive Officer
$227.9K
Hrs/Wk
40
Compensation
$200.5K
Related Orgs
$0
Other
$27.4K
Christine Wyman Rossi
Vice President
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Sharon Mutnick
Treasurer
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Michelle Fynan
Secretary
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Francis Glorieux
Foundation Member
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Ted Trahan
President
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Kenneth Finkel
Vice President
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Highest compensated employees who are not officers or directors.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Katherine E Carter | Chief Program Officer | 40 | $129.6K | $0 | $6,588 | $136.1K |
Katherine E Carter
Chief Program Officer
$136.1K
Hrs/Wk
40
Compensation
$129.6K
Related Orgs
$0
Other
$6,588
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Billy Huang | Board Member | 2 | $0 | $0 | $0 | $0 |
| James Sharples | Board Member | 2 | $0 | $0 | $0 | $0 |
| Karen Braitmayer | Board Member | 2 | $0 | $0 | $0 | $0 |
| Michael Sheridan | Board Member | 2 | $0 | $0 | $0 | $0 |
| V Reid Sutton Md | Board Member | 2 | $0 | $0 | $0 | $0 |
| Wendy E Sacks | Board Member |
Billy Huang
Board Member
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
James Sharples
Board Member
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Karen Braitmayer
Board Member
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
| $1.7M |
| $1.4M |
| 2019 | $1.8M | $1.7M | $2.1M | $1.8M | $1.5M |
| 2018 | $1.7M | $1.5M | $1.7M | $2.3M | $1.8M |
| 2017 | $1.8M | $1.5M | $1.9M | $2.3M | $1.9M |
| 2016 | $1.3M | $1.3M | $1.7M | $2.5M | $2M |
| 2015 | $1.8M | $1.6M | $1.7M | $2.7M | $2.4M |
| 2014 | $1.3M | $1.2M | $1.4M | $2.7M | $2.4M |
| 2013 | $1.4M | $1.4M | $1.7M | $2.6M | $2.3M |
| 2012 | $1.6M | $1.5M | $1.5M | $2.8M | $2.3M |
| 2011 | $1.6M | $1.5M | $1.6M | $2.6M | $2.3M |
| 2021 | 990 | Data |
| 2020 | 990 | Data |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | — |
| 2009 | 990 | — |
| 2008 | 990 | — |
| 2007 | 990 | — |
| 2006 | 990 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| 2003 | 990 | — |
| 2002 | 990 | — |
| 2001 | 990 | — |
| 2 |
| $0 |
| $0 |
| $0 |
| $0 |
Michael Sheridan
Board Member
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
V Reid Sutton Md
Board Member
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Wendy E Sacks
Board Member
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0