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CHARITY REVIEW
Issued: January 2024 Expires: January 2026

Cure HHT

Standards Not Met
Standards Not Met
14
(410) 357-9932
Post Office Box 329
Monkton, MD, 21111
https://curehht.org/
📄 Full Report 🖨️ Print 📋 BBB Charity Standards

Standards For Charity Accountability

Governance

  1. Board Oversight
  2. Board Size
  3. Board Meetings
  4. Board Compensation
  5. Conflict of Interest

Measuring Effectiveness

  1. Effectiveness Policy
  2. Effectiveness Report

Finances

  1. Program Expenses
  2. Fundraising Expenses
  3. Accumulating Funds
  4. Audit Report
  5. Detailed Expense Breakdown
  6. Accurate Expense Reporting
  7. Budget Plan

Fundraising & Info

  1. Truthful Materials
  2. Annual Report
  3. Website Disclosures
  4. Donor Privacy
  5. Cause Marketing Disclosures
  6. 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

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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Report completed by:
BBB Wise Giving Alliance