Barth Syndrome Foundation
Meets Standards
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
Barth Syndrome Foundation meets the 20 Standards for Charity Accountability.
Stated Purpose:
"to save lives through education, advances in treatment, and finding a cure for Barth syndrome."
Year, State Incorporated:
2000, DE
Barth Syndrome Foundation (BSF) reports that it disseminates information about research and phenotype of the disorder. BSF's principal program activities include family support, research, outreach, education, physician awareness, a registry and repository, and the facilitation of advances in science and medicine.
For the year ended December 31, 2025, Barth Syndrome Foundation's program expenses were:
| Research grants | $512,458 |
| Advocacy and awareness | $386,587 |
| Science and medicine | $349,101 |
| Communication and awareness | $194,237 |
| Barth registry and repository | $105,132 |
| Family services | $42,073 |
| BSF Regional Meetings | $1,575 |
| Total Program Expenses | $1,591,163 |
Chief Executive
Emily Milligan, Chief Executive Officer
Compensation*
$259,135
Chair of the Board
Katherine R. McCurdy
Board Size
11
Paid Staff Size
6
*2025 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Direct mail appeals, Invitations to fund raising events, Grant proposals, Internet, Planned giving, workplace giving
Fundraising costs were 12% of related contributions. (Related contributions, which totaled $1,906,402, 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 Barth Syndrome Foundation's audited financial statements for the year ended December 31, 2025.
Source of Funds
| Contributions | $1,230,160 |
| Realized and unrealized gains on investments, net | $298,920 |
| Special event, net | $296,241 |
| Grant income | $230,001 |
| Interest and dividend income | $175,316 |
| Affiliate donation for research grants | $150,000 |
| Other revenue | $5,559 |
| Total Income | $2,386,197 |
Programs: 77% Fundraising: 11% Administrative: 12%
| Total Income | $2,386,197 |
| Total expenses: | $2,061,095 |
| Program expenses | $1,591,163 |
| Fundraising expenses | $220,653 |
| Administrative expenses | $249,279 |
| Other expenses | $0 |
| Income in Excess of Expenses | $325,102 |
| Beginning Net Assets | $5,220,286 |
| Other Changes In Net Assets | $0 |
| Ending Net Assets | $5,545,388 |
| Total Liabilities | $478,161 |
| Total Assets | $6,023,549 |
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.
RELATED CONTENT
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Meets Standards
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Standards Not Met
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Did Not Disclose
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Review in Progress
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Unable to Verify
Report completed by:
BBB Wise Giving Alliance