Bobby Jones Chiari and Syringomyelia 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
Bobby Jones Chiari and Syringomyelia Foundation meets the 20 Standards for Charity Accountability.
Stated Purpose:
"to advance knowledge through research and to educate the medical, allied sciences and lay community about Chiari malformation, syringomyelia and related disorders."
Year, State Incorporated:
2007, NY
Bobby Jones Chiari & Syringomyelia Foundation (BJCSF) provides services in education, research, support, awareness, and advocacy. Through their educational programs, the organization reports that they provide patients seeking guidance with information on its website, including educational materials and a listing of physicians that may offer medical advice. The organization reports that its educational lecture series has an average of 10,000 views per month and videos have been accessed in 193 countries. The series includes free educational lectures in the US and international venues to provide patients and families with information on clinical applications and research regarding these conditions and are provided in person and virtually. BJCSF also funds support group meetings in-person, and online to meet those in need. BJCSF also engages in research and the organization was selected as the official patient advocacy partner on a $2.8 million randomized control trial. Additionally, BJCSF continues to fund small research grants and larger, multi-institutional projects like the Chiari Surgical Success Scale (CSSS), which involves partnerships with 20 clinical and academic partners participating in the study. BJCSF is also organizing the Chiari Clinical Research Consortium, a consortium of interested academics, clinical partners and advocates. The Consortium oversees the CSSS study and several upcoming studies and clinical trials.
For the year ended December 31, 2024, Bobby Jones Chiari and Syringomyelia Foundation's program expenses were:
Program services: $945,201
Total Program Expenses: $945,201
Chief Executive
Dorothy Poppe, Executive Director
Compensation*
$163,488
Chair of the Board
James Rains
Chair's Profession / Business Affiliation
Professor, Depertment ogf Biological Engineering, Georgia Tech
Board Size
8
Paid Staff Size
5
*2024 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Grant proposals, Internet, Direct mail appeals, Radio
Fundraising costs were 25% of related contributions. (Related contributions, which totaled $674,515, 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 Bobby Jones Chiari and Syringomyelia Foundation's audited financial statements for the year ended December 31, 2024.
Source of Funds
| Public support | $195,512 |
| Member fundraiser | $3,409 |
| Foundation and trust grants | $233,507 |
| In-kind donations | $449,307 |
| Bobby Jones Classic golf event, net | $73,612 |
| NY charity ball, net | $32,543 |
| Night of Light gala, net | $58,875 |
| Dinner Dance for a Cure, net | $22,999 |
| Unite at Night event, net | $287,565 |
| Investment income | $31,977 |
| Gain on investment portfolio | $73,017 |
| Total Income | $1,462,322 |
Programs: 75% Fundraising: 13% Administrative: 11%
| Total Income | $1,462,322 |
| Total expenses: | $1,253,350 |
| Program expenses | $945,201 |
| Fundraising expenses | $166,042 |
| Administrative expenses | $142,107 |
| Other expenses | $0 |
| Income in Excess of Expenses | $208,972 |
| Beginning Net Assets | $1,091,464 |
| Other Changes In Net Assets | $0 |
| Ending Net Assets | $1,300,436 |
| Total Liabilities | $5,891 |
| Total Assets | $1,306,327 |
Note: According to the organization's 2024 audited financial statements, BJCSF received in-kind income of $449,307 in the form of research services ($384,038), events ($42,469), and office space ($22,800).
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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Standards Not Met
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Review in Progress
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Report completed by:
BBB Wise Giving Alliance