Cure HHT
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
Cure HHT does not meet the following 1 Standards for Charity Accountability:
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.
Cure HHT does not meet this Standard because, when the organization provided 2023 budget information, it indicated that the budget:
- Did not identify total projected program service expenses by each major program category (research, public information, education, and advocacy).
- Did not identify total projected fundraising expenses.
- Did not identify total projected administrative expenses.
Cure HHT meets the remaining 19 Standards for Charity Accountability.
Stated Purpose:
"to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT."
Year, State Incorporated:
1990, MD
Also Known As:
HHT Foundation International
Cure HHT provides patient and physician education about HHT awareness, diagnosis, and treatments through conferences, professional association meetings, website, social media and electronic communications, and telephone interactions. The organization collaborates with and certifies multidisciplinary HHT treatment centers worldwide while advocating for patient access to these centers. Cure HHT also works to fund research to find better treatments – and ultimately, a cure. In 2022, the foundation organized and hosted its 14th International Scientific Conference, where over 300 healthcare professionals attended. Additionally, Cure HHT produced over 70 webinars with experts in the field, increased its online Find a Doctor directory to over 950 physicians, and communicates regularly with a database of over 9,000 patients and caregivers.
For the year ended June 30, 2022, Cure HHT's program expenses were:
Research | $1,103,224 |
Public information | $284,002 |
Education | $220,326 |
Advocacy | $41,725 |
Total Program Expenses | $1,649,277 |
Chief Executive
Marianne Clancy, Executive Director
Compensation*
$183,548
Chair of the Board
John Dunn
Chair's Profession / Business Affiliation
Board Size
16
Paid Staff Size
12
*2021 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Radio
Fundraising costs were 2% of related contributions. (Related contributions, which totaled $2,333,347, 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 Cure HHT's audited financial statements for the year ended June 30, 2022.
Source of Funds
Total investment loss, net | $-62,572 |
Miscellaneous | $4,286 |
Conferences | $23,936 |
Special events, net | $128,859 |
Paycheck Protection Program loan forgiveness | $216,817 |
Federal grant awards | $428,382 |
Contributions and grants | $1,559,289 |
Total Income | $2,298,997 |
Programs: 88% Fundraising: 3% Administrative: 10%
Total Income | $2,298,997 |
Total expenses: | $1,884,387 |
Program expenses | $1,649,277 |
Fundraising expenses | $52,324 |
Administrative expenses | $182,786 |
Other expenses | $0 |
Income in Excess of Expenses | $414,610 |
Beginning Net Assets | $2,729,995 |
Other Changes In Net Assets | $0 |
Ending Net Assets | $3,144,605 |
Total Liabilities | $178,682 |
Total Assets | $3,323,287 |
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