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Nonprofiteer
← INTERNATIONAL F O P ASSOCIATION INC

Form 990 for tax year 2023

Filed by INTERNATIONAL F O P ASSOCIATION INC.

Totals

Total revenue
$1,810,030
Total expenses
$3,318,084
Contributions and grants received
$1,685,848
Grants paid
$857,200
Program service revenue
$137,867
Investment income
$95,796
Other revenue
-$109,481
Total assets, end of year
$4,172,035
Total liabilities, end of year
$633,260
Net assets or fund balances, end of year
$3,538,775
Program services expenses (Part IX)
$2,670,646
Management and general expenses
$406,976
Fundraising expenses
$240,462
Program service expenses (Part III)
$2,670,646

Program services were 80.5% 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.

  • 1a · Federated campaigns

    $5,395

  • 1c · Fundraising events

    $399,858

  • 1f · All other contributions, gifts and grants

    $1,280,595

  • 2a · Program service revenue: PROGRAM SERVICE FEES

    total $123,734 · related or exempt $123,734

  • 2b · Program service revenue: EVENT REGISTRATION

    total $14,133 · related or exempt $14,133

  • 3 · Investment income

    total $104,288 · excluded $104,288

  • 7a · Gross sales of assets other than inventory

    securities $458,366

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

    securities $466,858

  • 7c · Gain or loss

    securities -$8,492

  • 7d · Net gain or loss

    total -$8,492 · excluded -$8,492

  • 8a · Fundraising events: gross income

    $9,740

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

    $399,858

  • 8b · Fundraising events: direct expenses

    $124,488

  • 8c · Net income from fundraising events

    total -$114,748 · excluded -$114,748

  • 11a · Other revenue: MISCELLANEOUS REVENUE

    total $5,267 · related or exempt $5,267

  • 11e · Other revenue, total

    $5,267

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $524,344 · program services $524,344

  • 2 · Grants to domestic individuals

    total $6,725 · program services $6,725

  • 3 · Grants to foreign organizations and individuals

    total $326,131 · program services $326,131

  • 5 · Compensation of officers, directors and key employees

    total $208,094 · program services $145,666 · management and general $39,538 · fundraising $22,890

  • 7 · Other salaries and wages

    total $651,546 · program services $467,772 · management and general $97,832 · fundraising $85,942

  • 9 · Other employee benefits

    total $15,398 · management and general $15,398

  • 10 · Payroll taxes

    total $66,291 · program services $47,687 · management and general $9,672 · fundraising $8,932

  • 11b · Fees: legal

    total $9,337 · program services $7,819 · management and general $920 · fundraising $598

  • 11c · Fees: accounting

    total $76,024 · management and general $76,024

  • 11e · Fees: professional fundraising services

    total $6,608 · fundraising $6,608

  • 11g · Fees: other

    total $697,732 · program services $614,696 · management and general $33,614 · fundraising $49,422

  • 12 · Advertising and promotion

    total $1,603 · program services $583 · management and general $654 · fundraising $366

  • 13 · Office expenses

    total $49,036 · program services $29,422 · management and general $17,139 · fundraising $2,475

  • 14 · Information technology

    total $171,631 · program services $147,025 · management and general $10,418 · fundraising $14,188

  • 16 · Occupancy

    total $11,421 · program services $3,811 · management and general $7,610

  • 17 · Travel

    total $135,073 · program services $121,386 · management and general $6,641 · fundraising $7,046

  • 19 · Conferences, conventions and meetings

    total $147,163 · program services $110,636 · management and general $36,527

  • 22 · Depreciation, depletion and amortization

    total $82,581 · program services $79,519 · management and general $838 · fundraising $2,224

  • 23 · Insurance

    total $8,316 · program services $2,036 · management and general $5,954 · fundraising $326

  • 24a · Other expenses: PRINTING AND PUBLICATIO

    total $30,501 · program services $15,180 · management and general $603 · fundraising $14,718

  • 24b · Other expenses: BAD DEBT EXPENSE

    total $27,000 · program services $0 · management and general $27,000 · fundraising $0

  • 24c · Other expenses: POSTAGE AND SHIPPING

    total $19,243 · program services $9,215 · management and general $788 · fundraising $9,240

  • 24d · Other expenses: REGISTRATION FEES

    total $15,298 · program services $2,190 · management and general $338 · fundraising $12,770

  • 24e · All other expenses

    total $30,988 · program services $8,803 · management and general $19,468 · fundraising $2,717

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $732,118 · end of year $295,849

  • 2 · Savings and temporary cash investments

    beginning of year $58,304 · end of year $59,632

  • 3 · Pledges and grants receivable

    beginning of year $631,166 · end of year $214,600

  • 4 · Accounts receivable

    beginning of year $167,057 · end of year $46,946

  • 9 · Prepaid expenses and deferred charges

    beginning of year $18,443 · end of year $106,427

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

    $6,003

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

    $5,781

  • 10c · Land, buildings and equipment, net

    beginning of year $444 · end of year $222

  • 11 · Investments: publicly traded securities

    beginning of year $3,233,300 · end of year $3,283,354

  • 14 · Intangible assets

    beginning of year $235,995 · end of year $165,005

  • 17 · Accounts payable and accrued expenses

    beginning of year $224,880 · end of year $378,260

  • 18 · Grants payable

    beginning of year $77,949 · end of year $0

  • 19 · Deferred revenue

    beginning of year $0 · end of year $255,000

  • 27 · Net assets without donor restrictions

    beginning of year $2,352,329 · end of year $1,978,708

  • 28 · Net assets with donor restrictions

    beginning of year $2,421,669 · end of year $1,560,067

Mission and programs · 2023

Mission

THE IFOPA'S MISSION IS TO FUND RESEARCH TO FIND A CURE FOR FIBRODYSPLASIA OSSIFICANS PROGRESSIVA (FOP) WHILE SUPPORTING, CONNECTING AND ADVOCATING FOR INDIVIDUALS WITH FOP AND THEIR FAMILIES, AND RAISING AWARENESS WORLDWIDE.

Activities or mission (Part I)

SEE SCHEDULE OTHE IFOPA'S MISSION IS TO FUND RESEARCH TO FIND A CURE FOR FIBRODYSPLASIA OSSIFICANS PROGRESSIVA (FOP) WHILE SUPPORTING, CONNECTING AND ADVOCATING FOR INDIVIDUALS WITH FOP AND THEIR FAMILIES, AND RAISING AWARENESS WORLDWIDE.

  • SEE SCHEDULE OMEDICAL RESEARCH: WITH A VISION TO CURE FOP, THE MAJORITY OF THE IFOPA'S BUDGET IS SPENT ON RESEARCH PROGRAMS AND SERVICES. THE GREATEST INVESTMENT IS THE FOP REGISTRY WHICH IS THE ONLY REGISTRY FOR FOP PATIENTS IN THE WORLD AND A CRITICAL TOOL FOR SCIENTIFIC RESEARCH. THE IFOPA ALSO DEDICATES A SIGNIFICANT PORTION OF FUNDING TO RESEARCH GRANTS, INCLUDING GRANTS TO THE UNIVERSITY OF PENNSYLVANIA'S CENTER FOR RESEARCH IN FOP AND RELATED DISORDERS. ADDITIONALLY, THE IFOPA FUNDS GRANTS THROUGH THE IFOPA'S ACT (ACCELERATING CURES AND TREATMENTS) FOR FOP GRANT PROGRAM AND GENE THERAPY AT THE UNIVERSITY OF MASSACHUSETTS. THE IFOPA ALSO SUPPORTS THE FOP BIOBANK AND A PRECLINICAL DRUG TESTING PROGRAM IN PARTNERSHIP WITH THE MAYO CLINIC.

    Expenses $1,543,134 · Grants $644,166 · Revenue $143,134

  • SEE SCHEDULE OEDUCATION AND SUPPORT PROGRAMS: SUPPORT, BOTH FUNCTIONAL AND EMOTIONAL, IS IMPERATIVE TO THE HEALTH OF THOSE LIVING WITH FOP AS WELL AS THEIR FAMILIES. STARTING IN 2018, THE IFOPA BEGAN A MAJOR EXPANSION OF OUR PROGRAMS AND SERVICES FOR FOP FAMILIES. IN ADDITION TO ONE-ON-ONE SUPPORT PROVIDED WHEN FAMILIES ARE NEWLY DIAGNOSED OR ARE LOOKING FOR TOOLS, TIPS AND HOME MODIFICATIONS TO HELP THEM LIVE MORE INDEPENDENTLY THROUGH OUR ABILITY TOOLBOX PROGRAM, THE IFOPA HAS DEVELOPED TWO PROGRAMS - RESILIENT LIVING AND THE ADVOCACY SERIES - TO SUPPORT THE MENTAL HEALTH AND PROBLEM-SOLVING SKILLS OF FOP FAMILIES. SINCE 2016, THE IFOPA HAS OFFERED AN ANNUAL FOP FAMILY GATHERING WHICH BECAME GLOBAL IN SCOPE STARTING IN 2020. IN 2023, THERE WAS ALSO AN IN-PERSON WORKSHOP FOR SIBLINGS OF INDIVIDUALS WITH FOP. THROUGH THE IFOPA'S INTERNATIONAL PRESIDENTS' COUNCIL WE WORK TO COORDINATE PROGRAMS AND SERVICES IN COUNTRIES AROUND THE WORLD. IN 2023, THE IFOPA PROVIDED GRANTS TO FAMILY MEETINGS HELD LOCALLY BY FOP NATIONAL ORGANIZATIONS. THE IFOPA ALSO STARTED A VARIETY OF ONLINE SUPPORT GROUPS FOR VARIOUS AUDIENCES INCLUDING ADULTS WITH FOP, CAREGIVERS AND BEREAVED FAMILIES, OFFER PARTICIPANTS THE OPPORTUNITY TO STAY CONNECTED AND SUPPORT ONE ANOTHER. FINALLY, EDUCATING PATIENTS AND FAMILIES ABOUT CLINICAL STUDIES AND TRIALS IS CORE TO OUR MISSION TO ADVANCE THE DEVELOPMENT OF THE FIRST-EVER TREATMENTS FOR FOP.

    Expenses $824,741 · Grants $20,000

  • SEE SCHEDULE OPUBLIC AWARENESS: FOP IS AN ULTRA-RARE DISEASE. VERY FEW PEOPLE HAVE HEARD OF FOP, LET ALONE KNOW ALL THAT IT ENTAILS - INCLUDING HEALTH CARE PROFESSIONALS. INCREASING AWARENESS AMONG HEALTH CARE PROFESSIONALS IS CRITICAL TO ENSURE THAT PATIENTS ARE DIAGNOSED EARLY, AVOID SEVERE COMPLICATIONS CAUSED BY MISDIAGNOSIS, GET ON THE PATH TO THE BEST MEDICAL CARE AND HAVE AN OPPORTUNITY TO PARTICIPATE IN CLINICAL STUDIES AND TRIALS. THROUGH OUR WEBSITE WHERE WE LIST CONTINUING MEDICAL EDUCATION PROGRAMS ON FOP FOR HEALTH CARE PROFESSIONALS, THE FOP FAMILY GATHERING AND VARIOUS PARTNERSHIPS, THE IFOPA WORKS TO INCREASE AWARENESS AND EDUCATION OF FOP AMONG HEALTH CARE PROFESSIONALS. SINCE 2021, WE HAVE PARTNERED WITH MEMBERS OF THE INTERNATIONAL PRESIDENTS' COUNCIL TO LAUNCH A GLOBAL FOP AWARENESS DAY CAMPAIGN WHICH INCLUDED SOCIAL MEDIA POSTS AND VIDEOS SHARED AROUND THE WORLD DURING THE MONTH OF APRIL.

    Expenses $302,771 · Grants $193,034

As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Megan Olsen

    CHAIR

    Total calculated
    $0
    Hours/week
    1

  • Rebecca Wallace

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    1

  • Emma Albee

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

  • Gary McGuire

    TREASURER

    Total calculated
    $0
    Hours/week
    1

  • Helen Bedford-Gay

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Kyle Brinkman

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Chrissy Flexer

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Nadine Grossman

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Kerry Hueston

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Hollie Schmidt

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Michelle Davis

    EXECUTIVE DIRECTOR

    Total calculated
    $208,094
    From this org
    $198,735
    From related orgs
    $0
    Other
    $9,359
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $180,644
    Bonus
    $18,091
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $9,359
    Filer's total
    $208,094

  • Danielle Kerkovich

    RESEARCH DIRECTOR

    Total calculated
    $163,700
    From this org
    $154,341
    From related orgs
    $0
    Other
    $9,359
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $154,341
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $9,359
    Filer's total
    $163,700

  • Samantha Kile

    REAL WORLD EVIDENCE MANAGER

    Total calculated
    $124,354
    From this org
    $123,997
    From related orgs
    $0
    Other
    $357
    Hours/week
    40

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 · Written employment contract
  • 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

Provenance

Return type
form_990
Tax year
2023
Filed
28 October 2024
IRS schema version
2023v5.1
Source object
202413049349301911

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