Bobby Jones Chiari and Syringomyelia Foundation meets the 20 Standards for Charity Accountability.
-
Year, State Incorporated
2007, NY
-
Also Known As
Chiari and Syringomyelia Foundation
-
-
Stated Purpose
"to advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related disorders."
Bobby Jones Chiari and Syringomyelia Foundation (Bobby Jones CSF) provides services in education, research, and awareness or advocacy. Through their education 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 also reports that the Physician Lecture Series was viewed over three million times and includes free educational lectures in the US and international venues to provide patients and families with a an information on clinical applications and research regarding these conditions. Bobby Jones CSF has completed the Common Data Elements (CDEs) for Chiari and syringomyelia, and this past year added Tethered Cord for the NIH and NINDS. The CSF PEER registry is expanding to a new platform which will enable patients to upload their electronic health records. Bobby Jones CSF has been selected to be a patient advocacy partner on a surgical trial for determining if decompression with/without duraplasty is a better treatment for children and will begin phase 2 in 2021. The establishment of Chiari Clinical Research Network (CCRN), an international collaborative network of neurosurgeons to standardize research, will provide a platform for multi-institutional clinical trials.
For the year ended December 31, 2019, Bobby Jones Chiari and Syringomyelia Foundation's program expenses were:
Program services |
$695,066 |
Total Program Expenses: |
$695,066 |
*2019 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Invitations to fund raising events, Planned giving arrangements
Fundraising costs were 16% of related contributions. (Related contributions, which totaled $751,851, 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, 2019.
Source of Funds |
New York City event, net |
$197,411 |
Public support |
$146,013 |
Bobby Jones Classic golf event, net |
$112,530 |
Unite at night events, net |
$110,112 |
Night of light gala, net |
$50,626 |
New York charity ball, net |
$47,061 |
Member fundraiser |
$46,971 |
Gain or loss on investment portfolio |
$43,997 |
Stock donation |
$42,460 |
Dinner dance for a cure, net |
$38,627 |
Investment income |
$8,531 |
Foundation and trust grants |
$2,500 |
Total Income |
$846,840 |
- Programs: 71%
- Administrative: 17%
- Fundraising: 12%
Total Income |
$846,840 |
Program expenses |
$695,066 |
Fundraising expenses |
$122,925 |
Administrative expenses |
$165,286 |
Other expenses |
$0 |
Total expenses: |
$983,277 |
Income in Excess of Expenses |
$-136,437 |
Beginning Net Assets |
$626,327 |
Other Changes In Net Assets |
$0 |
Ending Net Assets |
$489,889 |
Total Liabilities |
$47,609 |
Total Assets |
$537,498 |
Note: According to CSF's 2019 audited financinal statements, the organziation received in-kind contributions totaling $45,500 in the form of marketing services ($35,000) and rent ($10,500).