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INTERNATIONAL F O P ASSOCIATION INC

EIN 59-2918100 NORTH KANSAS CITY, MO

Browse the largest nonprofits in Missouri

Revenue 2024
$2,421,587
Expenses 2024
$3,105,043

Program services were 80.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
Classification
1200
Street
1520 CLAY ST STE H2

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2024

Mission

TO SUPPORT AND CONNECT THE GLOBAL FOP COMMUNITY WHILE DRIVING RESEARCH TOWARD TREATMENTS AND A CURE.

  • 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. THE IFOPA ALSO SUPPORTS THE FOP BIOBANK AND THE STOPFOP CLINICAL TRIAL AT THE UNIVERSITY OF AMSTERDAM.

    Expenses $1,669,094 · Grants $596,971 · Revenue $153,386

  • 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. OUR ONE-ON-ONE SUPPORT OFTEN BEGINS WHEN FAMILIES ARE NEWLY DIAGNOSED, OR 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. OUR SIGNATURE EVENT FOR FAMILIES IS THE FAMILY GATHERING WHERE 25-30 FAMILIES FROM ACROSS THE UNITED STATES COME TO LEARN, CONNECT AND INTERACT WITH FOP EXPERTS. THROUGH THE IFOPA'S INTERNATIONAL PRESIDENTS' COUNCIL WE WORK TO COORDINATE PROGRAMS AND SERVICES IN COUNTRIES AROUND THE WORLD. THE IFOPA ALSO STARTED A VARIETY OF ONLINE SUPPORT GROUPS FOR VARIOUS AUDIENCES INCLUDING ADULTS WITH FOP, CAREGIVERS AND BEREAVED FAMILIES, AND OFFERS 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 $701,063

  • 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 $115,702

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

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • Rebecca Wallace

    CHAIR

    Total calculated
    $0
    Hours/week
    1

  • Nadine Grossman

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    1

  • Emma Albee

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

  • Jamal Porter

    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

  • Sue Kahn

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Molly Rhodes

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Manuel Robert

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Hollie Schmidt

    EXECUTIVE COMMITTE MEMBER-AT-LARGE

    Total calculated
    $0
    Hours/week
    1

  • Michelle Davis

    EXECUTIVE DIRECTOR

    Total calculated
    $212,728
    From this org
    $203,218
    From related orgs
    $0
    Other
    $9,510
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $188,218
    Bonus
    $15,000
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $9,510
    Filer's total
    $212,728

  • Samantha Kile

    REAL WORLD EVIDENCE MANAGE

    Total calculated
    $134,641
    From this org
    $134,260
    From related orgs
    $0
    Other
    $381
    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. Earlier years are each on their own filing page.

Filings

  • 2024
    Revenue
    $2,421,587
    Expenses
    $3,105,043
    Contributions
    $2,085,169
    Grants paid
    $596,971
  • 2023
    Revenue
    $1,810,030
    Expenses
    $3,318,084
    Contributions
    $1,685,848
    Grants paid
    $857,200
  • 2022
    Revenue
    $3,050,181
    Expenses
    $3,502,663
    Contributions
    $2,944,223
    Grants paid
    $1,177,802

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

  • 2021 · 990

    Revenue
    $3,272,897
    Expenses
    $2,616,890
    Assets (EOY)
    $5,830,583

  • 2020 · 990

    Revenue
    $2,800,436
    Expenses
    $2,742,275
    Assets (EOY)
    $6,003,582

  • 2019 · 990

    Revenue
    $3,347,323
    Expenses
    $2,825,791
    Assets (EOY)
    $5,775,561

  • 2018 · 990

    Revenue
    $3,782,239
    Expenses
    $2,652,236
    Assets (EOY)
    $5,556,341

  • 2017 · 990

    Revenue
    $2,185,272
    Expenses
    $2,284,804
    Assets (EOY)
    $4,120,938

  • 2016 · 990

    Revenue
    $1,936,474
    Expenses
    $2,201,474
    Assets (EOY)
    $3,947,466

  • 2015 · 990

    Revenue
    $1,792,374
    Expenses
    $1,232,369
    Assets (EOY)
    $4,200,660

  • 2014 · 990

    Revenue
    $1,830,617
    Expenses
    $992,349
    Assets (EOY)
    $3,486,104

  • 2013 · 990

    Revenue
    $1,474,621
    Expenses
    $837,893
    Assets (EOY)
    $2,563,142

  • 2012 · 990

    Revenue
    not reported
    Expenses
    $614,209
    Assets (EOY)
    $1,915,094

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

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

Where these grants went next →

Grants received

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

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 11 November 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The registration facts above come from the IRS Business Master File published 9 November 2026 and read 9 November 2026, for every organization at once. Returns through tax year 2024, the newest we have parsed for this organization.