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Nonprofiteer
← HHT FOUNDATION INTERNATIONAL INC

Form 990 for tax year 2024

Filed by HHT FOUNDATION INTERNATIONAL INC.

Totals

Total revenue
$9,841,516
Total expenses
$7,129,175
Contributions and grants received
$9,245,580
Grants paid
$2,385,005
Program service revenue
$470,997
Investment income
$134,970
Other revenue
-$10,031
Total assets, end of year
$8,133,180
Total liabilities, end of year
$962,042
Net assets or fund balances, end of year
$7,171,138
Program services expenses (Part IX)
$6,146,108
Management and general expenses
$612,535
Fundraising expenses
$370,532
Program service expenses (Part III)
$6,146,108

Program services were 86.2% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $30,036

  • 1e · Government grants (contributions)

    $4,416,977

  • 1f · All other contributions, gifts and grants

    $4,798,567

  • 1g · Noncash contributions included above

    $207,396

  • 2a · Program service revenue: CONFERENCE FEES

    total $470,997 · related or exempt $470,997

  • 3 · Investment income

    total $110,501 · excluded $110,501

  • 7a · Gross sales of assets other than inventory

    securities $866,571

  • 7b · Less cost or other basis and sales expenses

    securities $842,102

  • 7c · Gain or loss

    securities $24,469

  • 7d · Net gain or loss

    total $24,469 · excluded $24,469

  • 8a · Fundraising events: gross income

    $11,942

  • 8a · Fundraising events: contributions included on line 1c

    $30,036

  • 8b · Fundraising events: direct expenses

    $29,804

  • 8c · Net income from fundraising events

    total -$17,862 · excluded -$17,862

  • 11a · Other revenue: OTHER INCOME

    total $7,831 · excluded $7,831

  • 11e · Other revenue, total

    $7,831

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $2,350,067 · program services $2,350,067

  • 2 · Grants to domestic individuals

    total $34,938 · program services $34,938

  • 5 · Compensation of officers, directors and key employees

    total $420,856 · program services $240,300 · management and general $111,218 · fundraising $69,338

  • 7 · Other salaries and wages

    total $758,456 · program services $625,698 · management and general $85,792 · fundraising $46,966

  • 8 · Pension plan contributions

    total $17,102 · program services $15,277 · management and general $1,253 · fundraising $572

  • 9 · Other employee benefits

    total $70,550 · program services $60,909 · management and general $6,117 · fundraising $3,524

  • 10 · Payroll taxes

    total $87,797 · program services $64,603 · management and general $14,764 · fundraising $8,430

  • 11d · Fees: lobbying

    total $59,747 · program services $59,747

  • 11e · Fees: professional fundraising services

    total $134,000 · fundraising $134,000

  • 11f · Fees: investment management

    total $3,567 · management and general $3,567

  • 11g · Fees: other

    total $1,985,514 · program services $1,851,192 · management and general $133,866 · fundraising $456

  • 12 · Advertising and promotion

    total $60,294 · program services $31,784 · management and general $409 · fundraising $28,101

  • 13 · Office expenses

    total $168,644 · program services $95,796 · management and general $49,313 · fundraising $23,535

  • 14 · Information technology

    total $387,447 · program services $222,337 · management and general $161,343 · fundraising $3,767

  • 16 · Occupancy

    total $14,171 · management and general $14,171

  • 17 · Travel

    total $91,656 · program services $41,507 · management and general $22,438 · fundraising $27,711

  • 19 · Conferences, conventions and meetings

    total $428,622 · program services $428,497 · management and general $125

  • 22 · Depreciation, depletion and amortization

    total $1,864 · management and general $1,864

  • 24a · Other expenses: MISCELLANEOUS AND CREDI

    total $32,366 · program services $13,750 · management and general $4,869 · fundraising $13,747

  • 24b · Other expenses: SUBSCRIPTIONS AND DUES

    total $11,485 · program services $1,100 · fundraising $10,385

  • 24c · Other expenses: PAZOPANIB

    total $8,606 · program services $8,606

  • 24d · Other expenses: OTHER GRANTS AND AWARDS

    total $1,426 · management and general $1,426

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $501,341 · end of year $786,548

  • 3 · Pledges and grants receivable

    beginning of year $2,030,724 · end of year $3,729,712

  • 9 · Prepaid expenses and deferred charges

    beginning of year $158,211 · end of year $84,089

  • 10a · Land, buildings and equipment: cost or other basis

    $14,487

  • 10b · Land, buildings and equipment: accumulated depreciation

    $12,784

  • 10c · Land, buildings and equipment, net

    beginning of year $3,567 · end of year $1,703

  • 11 · Investments: publicly traded securities

    beginning of year $2,420,226 · end of year $3,430,897

  • 15 · Other assets

    beginning of year $99,540 · end of year $100,231

  • 17 · Accounts payable and accrued expenses

    beginning of year $658,420 · end of year $962,042

  • 19 · Deferred revenue

    beginning of year $150,779

  • 27 · Net assets without donor restrictions

    beginning of year $1,934,700 · end of year $3,347,720

  • 28 · Net assets with donor restrictions

    beginning of year $2,469,710 · end of year $3,823,418

Mission and programs · 2024

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.

Activities or mission (Part I)

FIND A CURE FOR HHT WHILE SAVING THE LIVES AND IMPROVING THE WELL-BEING OF INDIVIDUALS AND FAMILIES AFFECTED BY HHT.

  • 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.

    Expenses $5,435,882 · Grants $2,385,005

  • EDUCATION - THE GOAL OF THE EDUCATION PROGRAM IS TO ADVANCE AWARENESS, ACCURATE DIAGNOSIS, AND BEST-PRACTICE TREATMENT OF HHT BY SUPPORTING PATIENT EDUCATION AND OUTREACH, SPONSORING EDUCATIONAL CONFERENCES AND PROFESSIONAL MEETINGS, AND STRENGTHENING A NETWORK OF COMPREHENSIVE HHT CLINICAL CENTERS OF EXCELLENCE.

    Expenses $390,312 · Revenue $470,997

  • PUBLIC INFORMATION - THE GOAL OF THE PUBLIC INFORMATION PROGRAM IS TO INCREASE AWARENESS OF HEREDITARY HEMORRHAGIC TELANGIECTASIA (HHT) AMONG THE GENERAL PUBLIC, PRIVATE SECTOR, AND GOVERNMENTAL AUDIENCES THROUGH STRATEGIC ENGAGEMENT WITH THE PRESS AND OTHER MEDIA CHANNELS.

    Expenses $290,891

  • ADVOCACY - THE GOAL OF THE ADVOCACY PROGRAM IS TO REPRESENT AND SUPPORT INDIVIDUALS AFFECTED BY HHT BY ADVANCING RECOGNITION OF THE DISORDER AND SECURING FUNDING TO EXPAND AWARENESS EFFORTS, IMPROVE ACCESS TO EXPERT CARE, AND PROMOTE PARTICIPATION IN CLINICAL TRIALS.

    Expenses $29,023

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • John Dunn

    PRESIDENT

    Total calculated
    $0
    Hours/week
    1

  • Gabriella Choi

    VICE PRESIDENT

    Total calculated
    $0
    Hours/week
    1

  • Marc Topaz Esq

    TREASURER

    Total calculated
    $0
    Hours/week
    1

  • Karen Silber Weissel PhD

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

  • Anthony Anzell PhD

    MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Scott Boatwright

    MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Howard Lichtig

    MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Marijo McCune

    MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Mike Nolan

    MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Brandon Probst PhD

    MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Dennis Sprecher MD

    MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Terry Thompson Jr

    MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Dennis Routledge

    MEMBER EMERITUS

    Total calculated
    $0
    Hours/week
    1

  • Marianne Clancy

    EXECUTIVE DIRECTOR

    Total calculated
    $234,751
    From this org
    $199,190
    From related orgs
    $0
    Other
    $35,561
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $199,190
    Bonus
    $0
    Other
    $0
    Deferred
    $5,792
    Nontaxable benefits
    $29,769
    Filer's total
    $234,751

  • Stefanie-Nicole Schaefer

    CHIEF OPERATING OFFICER

    Total calculated
    $136,271
    From this org
    $114,106
    From related orgs
    $0
    Other
    $22,165
    Hours/week
    40

  • Melissa Dickey

    DIRECTOR, NAT'L HHT COORDINATING CENTER

    Total calculated
    $159,370
    From this org
    $145,845
    From related orgs
    $0
    Other
    $13,525
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $145,845
    Bonus
    $0
    Other
    $0
    Deferred
    $4,408
    Nontaxable benefits
    $9,117
    Filer's total
    $159,370

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Answered yes

  • 3 · Approval by the board or compensation committee

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

The 10 largest by cash amount. The API serves every itemized grant.

Provenance

Return type
form_990
Tax year
2024
Filed
9 March 2026
IRS schema version
2024v5.5
Source object
202600839349300210

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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