Neuroendocrine Tumor Research Foundation does not meet the following 2 Standards for Charity Accountability:
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.
NETRF does not meet this Standard because:
- The organization has not completed an effectiveness assessment in the last two years.
In response to this finding, the charity states:
"Due to the global pandemic starting in March 2020, NETRF was unable to conduct an effectiveness assessment and present a findings report to its Board of Directors. At this time writing such assessment has not been rescheduled."
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.
NETRF does not meet this Standard because the 2019 annual report did not include:
- Total administrative expenses.
- Total fundraising expenses.
- Combined outreach and education expenses, which are two separate programs.
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:
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Neuroendocrine Tumor Research Foundation meets the remaining 17 Standards for Charity Accountability.
Neuroendocrine Tumor Research Foundation (NETRF) reports that it works to address the lack of funding research on carcinoid, pancreatic, and related neuroendocrine cancers, as well as the lack of educational resources. The organization hosts patient education series and promotes disease awareness. NETRF also provides educational materials, support, and open forum opportunities for patients, caregivers, researchers, and clinicians to connect and learn. In 2019, the organization reports it awarded $4.7 million in new grant funding in 16 research studies, engaged 25,700 people with neuroendocrine tumor information, and supported 30 active research studies in eight countries.
For the year ended December 31, 2019, Neuroendocrine Tumor Research Foundation's program expenses were:
Research |
$5,095,762 |
Patient education |
$289,879 |
Outreach and support |
$82,563 |
Total Program Expenses: |
$5,468,204 |
-
Chief Executive
Elyse Gellerman, Chief Executive Officer
-
Compensation*
$178,696
-
Chair of the Board
Joseph Li
-
Chair's Profession / Business Affiliation
Section Chief, Hospital Medicine, Beth Israel Deaconess Medical Center
-
Board Size
11
-
Paid Staff Size
6
*2019 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Planned giving arrangements, Telephone appeals
Fundraising costs were 6% of related contributions. (Related contributions, which totaled $4,737,086, 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 Neuroendocrine Tumor Research Foundation's audited financial statements for the year ended December 31, 2019.
Source of Funds |
Contributions, grants and sponsorships |
$4,737,086 |
Investment income, net |
$2,161,111 |
Total Income |
$6,898,197 |
- Programs: 92%
- Fundraising: 5%
- Administrative: 3%
Total Income |
$6,898,197 |
Program expenses |
$5,468,204 |
Fundraising expenses |
$299,545 |
Administrative expenses |
$196,601 |
Other expenses |
$0 |
Total expenses: |
$5,964,350 |
Income in Excess of Expenses |
$933,847 |
Beginning Net Assets |
$12,349,129 |
Other Changes In Net Assets |
$0 |
Ending Net Assets |
$13,282,976 |
Total Liabilities |
$9,029,796 |
Total Assets |
$22,312,772 |