Osteogenesis Imperfecta Foundation
Standards For Charity Accountability
Governance
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Board Oversight
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Board Size
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Board Meetings
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Board Compensation
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Conflict of Interest
Measuring Effectiveness
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Effectiveness Policy
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Effectiveness Report
Finances
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Program Expenses
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Fundraising Expenses
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Accumulating Funds
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Audit Report
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Detailed Expense Breakdown
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Accurate Expense Reporting
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Budget Plan
Fundraising & Info
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Truthful Materials
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Annual Report
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Website Disclosures
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Donor Privacy
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Cause Marketing Disclosures
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Complaints
Osteogenesis Imperfecta Foundation does not meet the following 5 Standards for Charity Accountability:
Standard 1 (Oversight of Operations and Staff)
Organizations shall have a board of directors that provides adequate oversight of the charity's operations and its staff. Indication of adequate oversight includes, but is not limited to, regularly scheduled appraisals of the CEO's performance, evidence of disbursement controls such as board approval of the budget, fund raising practices, establishment of a conflict of interest policy, and establishment of accounting procedures sufficient to safeguard charity finances.
OIF does not meet this Standard because its board of directors does not:
- Review the performance of the Chief Executive Officer at least once every two years.
Standard 6 (Board Policy on Effectiveness)
Have a board policy of assessing, no less than every two years, the organization's performance and effectiveness and of determining future actions required to achieve its mission.
OIF does not meet this Standard because:
- The board of directors does not have a written policy stating that, at least every two years, an appraisal be done assessing the organization’s performance and effectiveness and determining future actions required to achieve its mission.
Standard 7 (Board Approval of Written Report on Effectiveness)
Submit to the organization's governing body, for its approval, a written report that outlines the results of the aforementioned performance and effectiveness assessment and recommendations for future actions.
OIF does not meet this Standard because:
- The organization has not completed an effectiveness assessment in the last two years.
Standard 14 (Budget)
Have a board-approved annual budget for its current fiscal year, outlining projected expenses for major program activities, fund raising, and administration.
OIF does not meet this Standard because, when the organization provided 2024 budget information, it indicated that the budget:
- Did not identify total projected program service expenses broken down by major program category (conferences, education and support, research, and awareness).
- Did not identify total projected fundraising expenses.
- Did not identify total projected administrative expenses.
Standard 16 (Annual Report)
Have an annual report available to all, on request, that includes: (a) the organization's mission statement, (b) a summary of the past year's program service accomplishments, (c) a roster of the officers and members of the board of directors, (d) financial information that includes (i) total income in the past fiscal year, (ii) expenses in the same program, fund raising and administrative categories as in the financial statements, and (iii) ending net assets.
OIF does not meet this Standard because the 2022 annual report did not include:
- Total end of year net assets.
- Total income matching the 2022 audited financial statements.
The BBB Wise Giving Alliance requested but did not receive complete information from the organization and is unable to verify the organization's compliance with the following Standard(s) for Charity Accountability: 3, 15
Osteogenesis Imperfecta Foundation meets the remaining 13 Standards for Charity Accountability.
Stated Purpose:
"to improve the lives of people with Osteogenesis imperfecta through research, education, awareness and mutual support."
Year, State Incorporated:
1970, GA
The Osteogenesis Imperfecta Foundation (OIF) offers a range of program services aimed at supporting individuals and families affected by osteogenesis imperfecta (OI). These services include information dissemination through their website, educational materials, and online resources to help those living with OI understand the condition and access relevant resources. The organization organizes annual conferences and regional events where individuals with OI, their families, and medical professionals can come together for education, networking, and support. OIF provides funding for research aimed at better understanding OI, improving treatments, and ultimately finding a cure. OIF also offer support services such as peer mentoring programs, support groups, and a helpline staffed by experts who can provide guidance and assistance to those navigating the challenges of living with OI. Additionally, the organization advocates for policies and initiatives that benefit the OI community, including increased funding for research, improved access to healthcare, and disability rights.
For the year ended June 30, 2023, Osteogenesis Imperfecta Foundation's program expenses were:
Conferences: $179,594
Education and support: $716,177
Research: $611,933
Public awareness: $145,739
Total Program Expenses: $1,653,443
Chief Executive
Tracy Hart, Chief Executive Officer
Compensation*
$232,463
Chair of the Board
Ted Trahan
Chair's Profession / Business Affiliation
Board Size
13
Paid Staff Size
11
*2021 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Direct mail appeals, Radio
Fundraising costs were 10% of related contributions. (Related contributions, which totaled $2,164,573, are donations received as a result of fundraising activities.)
This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.
The following information is based on Osteogenesis Imperfecta Foundation's audited financial statements for the year ended June 30, 2023.
Source of Funds
| Contributions and grants | $1,526,574 |
| Event revenue | $416,193 |
| Direct mailing revenue | $187,840 |
| Contract revenue | $113,131 |
| In-kind contributions | $33,966 |
| Other income | $32,468 |
| Conference revenue | $4,427 |
| Product sales, net | $549 |
| Investment income | $106,873 |
| Total Income | $2,422,021 |
Programs: 74% Fundraising: 9% Administrative: 16%
| Total Income | $2,422,021 |
| Total expenses: | $2,226,083 |
| Program expenses | $1,653,443 |
| Fundraising expenses | $210,631 |
| Administrative expenses | $362,009 |
| Other expenses | $0 |
| Income in Excess of Expenses | $195,938 |
| Beginning Net Assets | $1,479,309 |
| Other Changes In Net Assets | $0 |
| Ending Net Assets | $1,675,247 |
| Total Liabilities | $670,918 |
| Total Assets | $2,346,165 |
Note: According to the organization's audited financial statements for the year ended June 30, 2023, OIF received in-kind contributions totaling $33,966 in the form of legal fees ($31,034) and gifts ($2,932).
An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the International Association of Better Business Bureaus.
This report is not to be used for fundraising or promotional purposes.
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Review in Progress
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Unable to Verify
Report completed by:
BBB Wise Giving Alliance