International Essential Tremor Foundation does not meet the following 7 Standards for Charity Accountability:
Standard 3 (Frequency and Attendance of Board Meetings)
An organization shall have a minimum of three evenly spaced meetings per year of the full governing body with a majority in attendance, with face-to-face participation. A conference call of the full board can substitute for one of the three meetings of the governing body. For all meetings, alternative modes of participation are acceptable for those with physical disabilities.
IETF does not meet this Standard because:
- The board of directors held one meeting during the year ended March 31, 2021.
Standard 6 (Board Policy on Effectiveness)
Have a board policy of assessing, no less than every two years, the organization's performance and effectiveness and of determining future actions required to achieve its mission.
IETF does not meet this Standard because:
- The organization's effectiveness assessment policy does not specify that this assessment will take place at least once every two years.
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.
IETF does not meet this Standard because:
- The organization has not completed an effectiveness assessment in the last two years.
Standard 10 (Ending Net Assets)
Avoid accumulating funds that could be used for current program activities. To meet this standard, the charity's unrestricted net assets available for use should not be more than three times the size of the past year's expenses or three times the size of the current year's budget, whichever is higher.
IETF does not meet this Standard because:
- According to its audited financial statements for the year ending March 31, 2020, the organization's total unrestricted net assets were $3,187,037 or 5 times the charity's total expenses $628,402.
Standard 14 (Budget)
Have a board-approved annual budget for its current fiscal year, outlining projected expenses for major program activities, fund raising, and administration.
IETF does not meet this Standard because, when the organization provided 2021 budget information, it indicated that the budget:
- Did not identify total projected program service expenses.
- Did not identify total projected fundraising expenses.
- Did not identify total projected administrative expenses.
Standard 17 (Web Site Disclosures)
Include on any charity websites that solicit contributions, the same information that is recommended for annual reports, as well as the mailing address of the charity and electronic access to its most recent IRS Form 990.
IETF does not meet this Standard because the organization’s website, https://essentialtremor.org/, does not include all of the recommended information for those charity websites that solicit for donations. Specifically, it does not include:
- Electronic access to the organization’s IRS Form 990 for the year ended March 31, 2020.
Standard 18 (Privacy for Written Appeals & Internet Privacy)
Address privacy concerns of donors by (a) providing in written appeals, at least annually, a means (e.g., such as a check off box) for both new and continuing donors to inform the charity if they do not want their name and address shared outside the organization, (b) providing a clear, prominent and easily accessible privacy policy on any of its websites that tells visitors (i) what information, if any, is being collected about them by the charity and how this information will be used, (ii) how to contact the charity to review personal information collected and request corrections, (iii) how to inform the charity (e.g., a check off box) that the visitor does not wish his/her personal information to be shared outside the organization, and (iv) what security measures the charity has in place to protect personal information.
IETF does not meet this Standard because the privacy policy on the organization's website, https://essentialtremor.org/, does not indicate:
- What security measures are in place to protect personal information that is collected.
International Essential Tremor Foundation meets the remaining 13 Standards for Charity Accountability.
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Year, State Incorporated
1992, KS
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Stated Purpose
"to provide hope to the essential tremor community worldwide through awareness, education, support, and research."
International Essential Tremor Foundation (IETF) reports that it advocates for more research, awareness, and support for essential tremor and funds research to find the cause of essential tremor, better treatments, and a cure. The organization provides free educational and informational materials to healthcare providers, patients, and their families on the latest medical advancements and options. Informational materials include a current listing of physicians specializing in essential tremor. IETF states that it also hosts more than 70 support groups and offers scholarships to students with essential tremor. In 2020, the organization reports that it awarded six student scholarships and distributed one research grant.
For the year ended March 31, 2020, International Essential Tremor Foundation's program expenses were:
| Program services |
$495,430 |
| Total Program Expenses: |
$495,430 |
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Chief Executive
Patrick McCartney, Executive Director
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Compensation*
$102,340
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Chair of the Board
Kelly Lyons
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Chair's Profession / Business Affiliation
Research Professor of Neurology, University of Kansas Medical Center
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Board Size
8
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Paid Staff Size
3
*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, Membership appeals, Planned giving arrangements, Cause- related marketing (affinity credit cards, consumer product sales, etc.)
Fundraising costs were 5% of related contributions. (Related contributions, which totaled $879,129 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 International Essential Tremor Foundation's audited financial statements for the year ended March 31, 2020.
| Source of Funds |
| Memorials and bequests |
$226,252 |
| Contributions |
$198,244 |
| Membership dues |
$171,295 |
| Special events |
$89,309 |
| Research |
$82,561 |
| Grants |
$50,000 |
| Tremor talk |
$31,393 |
| Mailing list rental |
$30,075 |
| Other revenue |
$1,753 |
| Investment income |
($47,773) |
| Total Income |
$833,109 |
- Programs: 79%
- Administrative: 15%
- Fundraising: 6%
| Total Income |
$833,109 |
| Program expenses |
$495,430 |
| Fundraising expenses |
$41,767 |
| Administrative expenses |
$91,205 |
| Other expenses |
$0 |
| Total expenses: |
$628,402 |
| Income in Excess of Expenses |
$204,707 |
| Beginning Net Assets |
$3,496,561 |
| Other Changes In Net Assets |
$0 |
| Ending Net Assets |
$3,701,268 |
| Total Liabilities |
$11,820 |
| Total Assets |
$3,713,088 |