Hht Foundation
Nonprofit profile at a glance
- EIN
- 223115041
- IRS 990 coverage
- 2014–2024
- Forms available
- Form 990 2024
- Location
- Monkton, MD, USA
- Phone
- 4103579932
- Rating
- 74
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Chambers of Commerce & Business Leagues
Reported finances
- Revenue
- $9,841,516
- Expenses
- $7,129,175
- Assets
- $8,133,180
- Liabilities
- $962,042
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
16 people listed
Executive titles in this filing
- JOHN DUNN (PRESIDENT)
- GABRIELLA CHOI (VICE PRESIDENT)
- MARIANNE CLANCY (EXECUTIVE DIRECTOR)
Highest reported compensation
- MARIANNE CLANCY (EXECUTIVE DIRECTOR): $234,751 total reported compensation
- MELISSA DICKEY (DIRECTOR, NAT'L HHT COORDINATING CENTER): $159,370 total reported compensation
- STEFANIE-NICOLE SCHAEFER (CHIEF OPERATING OFFICER): $136,271 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
Hht foundation international, inc. Is a not-for-profit organization dedicated to serving individuals affected by hereditary hemorrhagic telangiectasia (hht). The organization provides information to patients, family members, and healthcare professionals; offers support and community for patients and their families; raises funds to advance basic and clinical research; and sponsors research grants to promote scientific studies focused on hht.
What it reported doing in 2024
Research - the research program supports funding for studies that advance understanding of the underlying mechanisms of hht, fosters the development of novel therapeutic approaches for treatment and disease management, and promotes translational research that leads to multi-center clinical trials. In addition, the hht international scientific conference is held biennially to facilitate collaboration and the exchange of scientific knowledge among researchers and clinicians.
Operating model
- Revenue model
- Mixed. Its operating money came from several sources; no one source provided a clear majority.
- Distribution model
- Hybrid. The nonprofit split its reported program spending across 61% for direct work, and 39% for grants.
- Includes noncash contributions: Reported contributions include donated property or goods.
The verdict
SUPPORTED - A large share of available resources goes toward mission work and most voting board members are independent. The filing reports few safeguards for money sent abroad and some filing-based governance responses are negative or unanswered.
Rating breakdown
- Financial Efficiency: 71
- Transparency & Controls: 63
- Accountability: 95
- Sustainability: 62
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 63%; rating input score 63
- Program expense ratio: 86.2%; rating input score 86
- Fundraising efficiency: $24.95 raised per $1 spent on fundraising; rating input score 65; 65th percentile among comparable filings
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
- Pay-setting controls: 1 of 6 controls in place; rating input score 17
- Compensation committee: Missing
- Independent consultant: Missing
- Other Form 990s reviewed: Missing
- Written employment contract: Missing
- Compensation survey or study: Missing
- Board or committee approval: Pass
- Foreign activity oversight: Scored; rating input score 0
- Grant itemization coverage: 100%; rating input score 100; 43rd percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
- Related-party transparency: Limited
Accountability
- Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
- Governance controls: 8 of 9 controls in place; rating input score 89
- Conflict-of-interest policy: Pass
- Whistleblower policy: Pass
- Document-retention policy: Pass
- CEO compensation review process: Pass
- Other executive compensation review process: Fail
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Pass
Sustainability
- Operating margin: 27.6%; rating input score 83; 83rd percentile among comparable filings
- Total-asset coverage ratio: 1.14; rating input score 42; 42nd percentile among comparable filings
- Liabilities to assets ratio: 0.12; rating input score 55; 55th percentile among comparable filings
- Officer compensation ratio: 7.4%; rating input score 39; 39th percentile among comparable filings
Growth
- Program expense growth: 20% per year; rating input score 100; 85th percentile among comparable filings
- Revenue growth: 23.6% per year; rating input score 100; 91st percentile among comparable filings
- Asset growth: 17.7% per year; rating input score 100; 80th percentile among comparable filings
Details
- Where the money goes: 63% of revenue deployed · 86.2% of spending went to programs
- Governance: 13 of 13 board members independent · 8 of 9 filing controls reported
- Programs: 4 filed program accomplishments · $6.1M in reported program spending
- Leadership: top reported pay $235K · 16 people listed · 1 of 6 pay-setting controls reported
- Highest-paid contractors: 3 contractors listed · $1M reported
- Consistency: 38 of 38 current checks pass
- Schedules: 11 filed schedules · includes major donors, foreign activity, grants, and executive pay
- Filing history: 11 filing years from 2014 to 2024
- Contacts: How to reach this organization
- Money network: 22 filed money-flow records
- Related organizations: 19 filed related-organization links
- Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
- People: Everyone the filings name, and which of them the filings identify by more than a name.
- Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- High — Transparency & Controls: Foreign activity oversight scored 0/100.
- Review — Accountability: Governance controls: Other executive compensation review process not reported.
- Moderate — Sustainability: Total-asset coverage ratio scored 42/100.
- Moderate — Sustainability: Officer compensation ratio scored 39/100.
- Review — Sustainability: Liabilities to assets ratio scored 55/100.