International F O P Association Inc
- Assets
- $5.1m
- Revenue
- $3.1m
- Investments
- $0.0
- Employees
- 0
- Location
- North Kansas City, MO
- Founding
- 01/1989
- Data as of
- 12/2022
- EIN
- 59-2918100
Organization Overview
International F O P Association Inc is located in North Kansas City, MO. The organization was established in 1989. According to its NTEE Classification (P80) the organization is classified as: Centers to Support the Independence of Specific Populations, under the broad grouping of Human Services and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. International F O P Association Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2022, International F O P Association Inc generated $3.1m in total revenue. This represents relatively stable growth, over the past 8 years the organization has increased revenue by an average of 6.9% each year. All expenses for the organization totaled $3.5m during the year ending 12/2022. While expenses have increased by 13.9% per year over the past 8 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, International F O P Association Inc has awarded 39 individual grants totaling $4,814,462. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
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.
Describe the Organization's Program Activity:
Part 3 - Line 4a
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.
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. 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.
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 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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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Megan Olsen Chair | OfficerTrustee | 1 | $0 |
Rebecca Wallace Vice Chair | OfficerTrustee | 1 | $0 |
Emma Albee Secretary | OfficerTrustee | 1 | $0 |
Gary Mcguire Treasurer | OfficerTrustee | 1 | $0 |
Chris Bedford-Gay Director | Trustee | 1 | $0 |
Kyle Brinkman Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $5,494 |
| Membership dues | $0 |
| Fundraising events | $1,113,153 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,825,576 |
| Noncash contributions included in lines 1a–1f | $500 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $2,944,223 |
| Total Program Service Revenue | $181,638 |
| Investment income | $63,944 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $7,650 |
| Net Income from Fundraising Events | -$151,306 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $3,050,181 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $880,471 |
| Grants and other assistance to domestic individuals. | $5,696 |
| Grants and other assistance to Foreign Orgs/Individuals | $291,635 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $174,666 |
| Compensation of current officers, directors, key employees. | $34,934 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $609,910 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $24,119 |
| Payroll taxes | $59,705 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $41,918 |
| Fees for services: Accounting | $83,780 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $8,315 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $654,728 |
| Advertising and promotion | $4,827 |
| Office expenses | $29,395 |
| Information technology | $209,799 |
| Royalties | $0 |
| Occupancy | $8,684 |
| Travel | $87,757 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $130,778 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $80,090 |
| Insurance | $6,693 |
| All other expenses | $11,448 |
| Total functional expenses | $3,502,663 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $732,118 |
| Savings and temporary cash investments | $58,304 |
| Pledges and grants receivable | $631,166 |
| Accounts receivable, net | $167,057 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $18,443 |
| Net Land, buildings, and equipment | $444 |
| Investments—publicly traded securities | $3,233,300 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $235,995 |
| Other assets | $0 |
| Total assets | $5,076,827 |
| Accounts payable and accrued expenses | $224,880 |
| Grants payable | $77,949 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $302,829 |
| Net assets without donor restrictions | $2,352,329 |
| Net assets with donor restrictions | $2,421,669 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $5,076,827 |
Grants Awarded
Over the last fiscal year, International F O P Association Inc has awarded $879,471 in support to 7 organizations.
| Grant Recipient | Amount |
|---|---|
UNIVERSITY OF PENNSYLVANIA PURPOSE: RESEARCH | $599,618 |
NAVROGEN INC PURPOSE: RESEARCH | $9,750 |
UNIVERSITY OF MASSACHUSETTS PURPOSE: RESEARCH | $200,000 |
REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN FRANCISCO PURPOSE: RESEARCH | $7,750 |
EMORY UNIVERSITY PURPOSE: RESEARCH | $39,119 |
REGENTS OF THE UNIVERSITY OF MICHIGAN PURPOSE: RESEARCH | $15,234 |