Civic Intelligence

International Fop Association Inc

EIN 59-2918100 • 501(c)3 • North Kansas City, MO

Profile

The IFOPA's mission is to fund research to find a cure for Fibrodysplasia Ossificans Progressiva (FOP) while supporting individuals and their families through education, public awareness, and advocacy.

1520 Clay St Ste H2North Kansas City, MO 64116

www.ifopa.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

65th percentile

0.18x

Higher debt load relative to assets than 65% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Liabilities / Revenue

71st percentile

0.26x

Higher debt load relative to revenue than 71% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Net Margin

11th percentile

-28%

Higher net margin than 11% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Top Officer Pay

91st percentile

$212,728

Higher top officer pay than 91% of similar nonprofits.

Top officer pay equals 8.8% of source-year revenue.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Asset Growth

12th percentile

-16%

Faster asset growth than 12% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Revenue Growth

77th percentile

34%

Faster revenue growth than 77% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Assets

Down

$3,492,725

Down $679,310 (-16%) from 2023

Liabilities

Down

$630,798

Down $2,462 (-0.4%) from 2023

Net Assets

Down

$2,861,927

Down $676,848 (-19%) from 2023

Revenue

Up

$2,421,587

Up $611,557 (+34%) from 2023

Expenses

Down

$3,105,043

Down $213,041 (-6.4%) from 2023

Net Income

Up

-$683,456

Up $824,598 (+55%) from 2023

Trend Graphs

Balance Sheet Trend

Grouped bars show assets, liabilities, and net assets across loaded filings.

$8.0M$6.0M$4.0M$2.0M$0Assets 2011: $1,591,034Liabilities 2011: $12,166Net Assets 2011: $1,578,8682011Assets 2012: $1,915,094Liabilities 2012: $9,743Net Assets 2012: $1,905,3512012Assets 2013: $2,563,142Liabilities 2013: $17,008Net Assets 2013: $2,546,1342013Assets 2014: $3,486,104Liabilities 2014: $87,504Net Assets 2014: $3,398,6002014Assets 2015: $4,200,660Liabilities 2015: $312,827Net Assets 2015: $3,887,8332015Assets 2016: $3,947,466Liabilities 2016: $235,031Net Assets 2016: $3,712,4352016Assets 2017: $4,120,938Liabilities 2017: $470,072Net Assets 2017: $3,650,8662017Assets 2018: $5,556,341Liabilities 2018: $751,948Net Assets 2018: $4,804,3932018Assets 2019: $5,775,561Liabilities 2019: $274,638Net Assets 2019: $5,500,9232019Assets 2020: $6,003,582Liabilities 2020: $231,589Net Assets 2020: $5,771,9932020Assets 2021: $5,830,583Liabilities 2021: $188,519Net Assets 2021: $5,642,0642021Assets 2022: $5,076,827Liabilities 2022: $302,829Net Assets 2022: $4,773,9982022Assets 2023: $4,172,035Liabilities 2023: $633,260Net Assets 2023: $3,538,7752023Assets 2024: $3,492,725Liabilities 2024: $630,798Net Assets 2024: $2,861,9272024

Highlighted filing

2024

Assets$3,492,725
Liabilities$630,798
Net Assets$2,861,927

Operations Trend

Revenue, expenses, and net income by year, with the latest filing highlighted.

$4.0M$2.0M$0-$2.0MExpenses 2011: $694,6412011Expenses 2012: $614,2092012Revenue 2013: $1,474,621Expenses 2013: $837,893Net Income 2013: $636,7282013Revenue 2014: $1,830,617Expenses 2014: $992,349Net Income 2014: $838,2682014Revenue 2015: $1,792,374Expenses 2015: $1,232,369Net Income 2015: $560,0052015Revenue 2016: $1,936,474Expenses 2016: $2,201,474Net Income 2016: -$265,0002016Revenue 2017: $2,185,272Expenses 2017: $2,284,804Net Income 2017: -$99,5322017Revenue 2018: $3,782,239Expenses 2018: $2,652,236Net Income 2018: $1,130,0032018Revenue 2019: $3,347,323Expenses 2019: $2,825,791Net Income 2019: $521,5322019Revenue 2020: $2,800,436Expenses 2020: $2,742,275Net Income 2020: $58,1612020Revenue 2021: $3,272,897Expenses 2021: $2,616,890Net Income 2021: $656,0072021Revenue 2022: $3,050,181Expenses 2022: $3,502,663Net Income 2022: -$452,4822022Revenue 2023: $1,810,030Expenses 2023: $3,318,084Net Income 2023: -$1,508,0542023Revenue 2024: $2,421,587Expenses 2024: $3,105,043Net Income 2024: -$683,4562024

Highlighted filing

2024

Revenue$2,421,587
Expenses$3,105,043
Net Income-$683,456

Filings

Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$3.49$0.63$2.86$2.42$3.11$0.68
2023Summary only. Only limited summary data is available for this year.$4.17$0.63$3.54$1.81$3.32$1.51
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$5.08$0.30$4.77$3.05$3.50$0.45
2021Summary only. Only limited summary data is available for this year.$5.83$0.19$5.64$3.27$2.62$0.66
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$6.00$0.23$5.77$2.80$2.74$0.06
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$5.78$0.27$5.50$3.35$2.83$0.52
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$5.56$0.75$4.80$3.78$2.65$1.13
2017Facts available. Structured filing facts are available, but richer extracted sections are limited.$4.12$0.47$3.65$2.19$2.28$0.10
2016Facts available. Structured filing facts are available, but richer extracted sections are limited.$3.95$0.24$3.71$1.94$2.20$0.27
2015XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$4.20$0.31$3.89$1.79$1.23$0.56
2014Detailed filing. Detailed filing data is available for this year.$3.49$0.09$3.40$1.83$0.99$0.84
2013Detailed filing. Detailed filing data is available for this year.$2.56$0.02$2.55$1.47$0.84$0.64
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.92$0.01$1.91$0.61
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.59$0.01$1.58$0.69
Latest Detailed Filing

The latest 2024 filing currently has linked XML that has not been fully parsed yet. Showing the latest detailed filing from 2022 below.

Jump To
Filing Snapshot
Filing Period
Jan 1, 2022 to Dec 31, 2022
Signed
Nov 8, 2023
Return Version
2022v5.0
Gross Receipts
$3,471,892
Mission and Program Overview

Mission

The ifopa's mission is to fund research to find a cure for fibrodysplasia ossificans progressiva (fop) while supporting individuals and their families through education, public awareness, and advocacy.

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.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$3,667,473$3,233,300▼ $434,173
Cash and Non-Interest-Bearing Accounts$589,513$732,118▲ $142,605
Pledges and Grants Receivable$1,044,647$631,166▼ $413,481
Intangible Assets$262,169$235,995▼ $26,174
Accounts Receivable$848$167,057▲ $166,209
Savings and Temporary Cash Investments$160,312$58,304▼ $102,008
Prepaid Expenses and Deferred Charges$98,757$18,443▼ $80,314
Inventories for Sale or Use$6,198$0▼ $6,198
Land, Buildings, and Equipment, Net$666$444▼ $222
Total Assets$5,830,583$5,076,827▼ $753,756
Liabilities
Accounts Payable and Accrued Expenses$135,694$224,880▲ $89,186
Grants Payable$52,825$77,949▲ $25,124
Total Liabilities$188,519$302,829▲ $114,310
Net Assets / Fund Balance
Net Assets With Donor Restrictions$2,793,430$2,421,669▼ $371,761
Net Assets Without Donor Restrictions$2,848,634$2,352,329▼ $496,305
Total Net Assets Fund Balance$5,642,064$4,773,998▼ $868,066
Total Liabilities and Net Assets / Fund Balance$5,830,583$5,076,827▼ $753,756

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$444$5,559$6,003
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Michelle DavisExecutive DirectorFT$165,687$8,979$174,666
Danielle KerkovichResearch DirectorFT$140,401$8,930$149,331

Board Members and Trustees

Revenue and Support

Revenue Composition

Contributions and Grants
$2,944,223
Program Service Revenue
$181,638
Investment Income
$71,594
Other Revenue
$-147,274
All Other Contributions
$1,825,576
Change in Net Assets
$-452,482

Audited Revenue Reconciliation

Revenue per Audited Statements
$3,050,181
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$-288,226
Total Revenue per Audited Statements
$2,761,955
Total Revenue per Form 990
$3,050,181
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$1,448,146
Grants and Similar Amounts Paid$1,177,802
Salaries, Compensation, and Employee Benefits$868,400
Total Fundraising Expense$222,611
Professional Fundraising Fees$8,315

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$880,471--$880,471
Fees for Services Other$610,445$2,939$41,344$654,728
Other Salaries and Wages$462,334$72,402$75,174$609,910
Foreign Grants$291,635--$291,635
Information Technology$183,962$17,548$8,289$209,799
Current Officers, Directors, Trustees, and Key Employees$118,773$34,934$20,959$174,666
Conferences and Meetings$125,568$5,210-$130,778
Travel$79,004$1,348$7,405$87,757
Fees for Services Accounting$1,025$82,755-$83,780
Depreciation Depletion$77,575$2,515-$80,090
Payroll Taxes$45,314$6,402$7,989$59,705
Fees for Services Legal$38,940$1,935$1,043$41,918
Office Expenses$26,471$2,439$485$29,395
Other Employee Benefits$414$23,593$112$24,119
Other Expenses$6,493$1,311$10,256$18,060
All Other Expenses$2,184$9,112$152$11,448
Occupancy$1,000$7,684-$8,684
Fees for Services Professional Fundraising--$8,315$8,315
Insurance$1,964$4,420$309$6,693
Grants to Domestic Individuals$5,696--$5,696
Advertising$4,395$150$282$4,827
Total Functional Expenses$2,979,468$300,584$222,611$3,502,663

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$3,630,021
Expenses per Audited Statements$3,502,663
Total Expenses per Form 990$3,502,663
Expenses Not Reported on Form 990$127,358
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of PennsylvaniaPhiladelphia, PA-Research$599,618
University of MassachusettsWorcester, MA-Research$200,000
Emory UniversityAtlanta, GA-Research$39,119
Regents of the University of MichiganAnn Arbor, MI-Research$15,234
Navrogen IncGlen Mills, PA-Research$9,750
Coriell Institute for Medical ResearchCamden, NJ-Research$8,000
Regents of the University of California San FranciscoLos Angeles, CA-Research$7,750

International Summary

Offices
0
Employees
0
Spending
$0

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$291,899
Fundraising Gross Income$140,593
Professional Fundraising Fees$8,315

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Pursuit of a Cure$445,376-$85,165-
Finding a Cure$759,508$120,600$140,991$-20,391
Total Events$1,253,746$140,593$291,899$-151,306
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

FORM 990, PART V, LINE 2A; PART VII, COLUMN D; AND PART IX, LINES 5 AND 7.

International fop association inc (ifopa) has entered into a relationship with trinet, a professional employer organization (peo). As a result, ifopa does not file form w-3 and employees are not reported directly by ifopa. The peo filed on behalf of 8 ifopa employees during the year. The amounts from these filings are reported on part ix, lines 5 and 7.

Form 990, Part VI, Section A, Line 6

Membership in the organization is open to anyone with an interest in the organization and its purposes and activities. The organization has one class of membership.

Form 990, Part VI, Section A, Line 7A

Members of the organization have the power to elect directors of the organization.

Form 990, Part VI, Section B, Line 11B

The organization's top management official and top financial official each review the organization's form 990 prior to its filing with the irs. A copy of the final form 990 is also provided to the organization's governing body prior to its filing with the irs.

Form 990, Part VI, Section B, Line 12C

The chairperson of the board monitors all transactions entered into by the organization to determine if there is a conflict of interest, as defined in the organization's conflict of interest policy. If potential conflicts of interest arise, the conflict is discussed with the executive committee of the board for resolution in accordance with the procedures outlined in the conflicts of interest policy.

Form 990, Part VI, Section B, Line 15

The organization has adopted an executive compensation setting policy applicable to all disqualified persons, including the organization's officers and key employees. Under the policy, an independent committee of the board of directors annually reviews and approves the compensation levels of all individuals subject to the policy. The deliberations and decisions of the committee are contemporaneously substantiated. The committee utilizes comparability data in its deliberations. Updated comparability data is generally obtained every two to three years.

Form 990, Part VI, Section C, Line 19

The organization provides, upon request, copies of its articles of incorporation, bylaws, conflict of interest policy, and its financial statements.

Filing and Contact Details

Filer

Filer Name
International Fop Association Inc
EIN
59-2918100
Phone
4073654194
Address
1520 CLAY ST STE H2, NORTH KANSAS CITY, MO 64116

Signing Officer

Name
Michelle Davis
Title
Executive Director
Phone
4073654194
Signed
2023-11-08
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Michelle Davis
Formed
1988
Legal Domicile
Mo
Voting Board Members
13
Independent Board Members
13
Employees
0
Volunteers
150

Preparer

Firm
Rubinbrown Llp
Address
1200 MAIN STREET SUITE 1000, KANSAS CITY, MO 64105
Preparer
Matthew C Hall
Phone
8164721122
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

Communications: program service expenses 119,256. Management and general expenses 0. Fundraising expenses 29,437. Total expenses 148,693. Other professional fees: program service expenses 491,189. Management and general expenses 2,939. Fundraising expenses 11,907. Total expenses 506,035.

Part XII, Line 2

The organization's board of directors, or a committee therof, assumes responsibility for the oversight of the audit of its financial statements and the selection of an independent accountant. This process has not changed from the prior year.

Raw XML AppendixShowing 400 of 815 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

Path#Value
IRS990/AccountantCompileOrReviewInd00
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IRS990/AccountsReceivableGrp/EOYAmt0167057
IRS990/ActivitiesConductedPrtshpInd00
IRS990/ActivityOrMissionDesc0SEE 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.
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IRS990/Desc0SEE 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.
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IRS990/MissionDesc0THE 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.
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IRS990/ProgSrvcAccomActy2Grp/Desc0SEE 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. THROUGH THE IFOPA'S INTERNATIONAL PRESIDENT'S COUNCIL WE WORK TO COORDINATE PROGRAMS AND SERVICES IN COUNTRIES AROUND THE WORLD. COMMUNITY SOCIAL EVENTS, INCLUDING THE IFOPA'S FRIENDSHIP OVER PAGES BOOK CLUB AND BEREAVED FAMILIES ONLINE MEETUPS, OFFER FAMILIES 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.
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IRS990/ProgSrvcAccomActy3Grp/Desc0SEE 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 PRESIDENT'S 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.
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