Barth Syndrome Foundation Inc
Public records show a registered, tax-exempt organization in good standing.
What it says it does
THE BARTH SYNDROME FOUNDATION IS AN ENGAGED, GLOBAL COMMUNITY WHOSE MISSION IS SAVING LIVES THROUGH EDUCATION, ADVANCES IN TREATMENTS, AND FINDING A CURE FOR BARTH SYNDROME.
- Income
- $2.2 million
- Spending
- $2.1 million
- Spent on programs
- 77%
- Reserves
- 9.1 months of spending
- Largest source of income
- donations and private grants, 89%
- Employees
- 6
- Volunteers
- 200
- Highest pay
- $259,135, executive director
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Strong: 93 out of 100. Higher than 68% of charities in its peer group (philanthropy, $1m to $10m).
Reserves
28 of 35Spendable reserves would cover 9.1 months of spending.
Debt
20 of 20It owes 8% of what it owns.
Living within its means
15 of 15Income exceeded spending by 4% of income.
Income trend
15 of 15Income rose 11% on the year before.
Spending floor
15 of 1577% of spending went to programs and raising each dollar of donations cost 12 cents.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100. Higher than 65% of charities in its peer group (philanthropy, $1m to $10m).
Independent board
25 of 2513 of 13 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (4)
- $966,691 spent. THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2025 WAS COMPRISED OF A) THE BSF RESEARCH PROGRAM TO FOSTER SCIENTIFIC AND CLINICAL INVESTIGATIONS INTO BARTH SYNDROME TO FACILITATE THE DEVELOPMENT OF A SPECIFIC TREATMENT OR A CURE FOR THIS DISEASE, AND B)THE BARTH SYNDROME MEDICAL DATABASE AND BIO-REPOSITORY FOR THE COLLECTION AND STORAGE OF MEDICAL INFORMATION/SAMPLES ON INDIVIDUALS WITH BARTH SYNDROME OVER TIME TO GAIN A BETTER UNDERSTANDING OF THE DISEASE.
- $194,237 spent. COMMUNICATION AND AWARENESS REPRESENTS AWARENESS PROGRAMS DESIGNED TO ENSURE FAMILIES, PHYSICIANS, AND RESEARCHERS ARE AWARE OF BARTH SYNDROME.
- $386,587 spent. BSF BUILDS AWARENESS OF BARTH SYNDROME TO IMPROVE DIAGNOSIS AND CARE, WHILE ADVANCING ADVOCACY EFFORTS THAT AMPLIFY PATIENT VOICES, MOBILIZE OUR PATIENT COMMUNITY, AND SUPPORT PROGRESS IN RESEARCH AND TREATMENT ACCESS AND DRUG DEVELOPMENT POLICY
- $43,648 spent. BSF REGIONAL MEETINGS - CONFERENCE WHICH IS HELD EVERY TWO YEARS, BRINGS AFFECTED FAMILIES, RESEARCH SCIENTISTS AND CLINICIANS TOGETHER IN ONE PLACE AT A TIME, SO THAT THEY MAY COLLABORATE AND SHARE THEIR KNOWLEDGE TO GAIN A GREATER UNDERSTANDING OF BARTH SYNDROME AND LEARN ABOUT THE LATEST DISCOVERIES AND SCIENTIFIC RESEARCH AVAILABLE. FAMILIES HAVE A UNIQUE OPPORTUNITY TO BE SEEN BY THE WORLD'S GREATEST EXPERTS, THEREBY, CONTRIBUTING DIRECTLY TO THE SEARCH FOR A CURE BY PRODIVING INFORMATION AND TISSUE SAMPLES. OTHER PROGRAM SERVICES RELATED TO AWARENESS INCLUDE ADVOCACY AND AWARENESS AND FAMILY SERVICES
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated September 30, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated September 10, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since January 2001.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 7, 2026.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.