2024-10-30T12:21:06-05:00 2023-12-31 430765316 RUBINBROWN LLP 1200 MAIN STREET SUITE 1000 KANSAS CITY MO 64105 990 2023-01-01 592918100 INTERNATIONAL FOP ASSOCIATION INC INTE 4073654194 1520 CLAY ST STE H2 NORTH KANSAS CITY MO 64116 MICHELLE DAVIS EXECUTIVE DIRECTOR 4073654194 2024-10-28 1 0 MATTHEW C HALL P01573021 8164721122 2023 2024-10-15 13:58:12Z MICHELLE DAVIS 1520 CLAY ST STE H2 NORTH KANSAS CITY MO 64116 2401376 0 X WWW.IFOPA.ORG X 1988 MO 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. 10 10 0 150 0 0 2944223 1685848 181638 137867 71594 95796 -147274 -109481 3050181 1810030 1177802 857200 0 0 868400 941329 8315 6608 240462 1448146 1512947 3502663 3318084 -452482 -1508054 5076827 4172035 302829 633260 4773998 3538775 X 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. 0 0 1543134 644166 143134 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. 824741 20000 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. 302771 193034 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. 2670646 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 1 1 1 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 X 21 0 0 1 0 0 0 0 1 1 1 1 0 0 0 0 0 0 X 10 10 0 0 0 0 1 1 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AK AR CA CO CT FL GA IL KS KY ME MD MA MI MN MS MO NH NJ NM NY NC OH OK OR PA RI SC TN UT VA WA WV WI DC HI LA NV ND X X BERGANKDV CHRIS HERME 6122108993 3800 AMERICAN BOULEVARD WEST BLOOMINGTON MN 55431 MEGAN OLSEN CHAIR 1.00 X X 0 0 0 REBECCA WALLACE VICE CHAIR 1.00 X X 0 0 0 EMMA ALBEE SECRETARY 1.00 X X 0 0 0 GARY MCGUIRE TREASURER 1.00 X X 0 0 0 HELEN BEDFORD-GAY DIRECTOR 1.00 X 0 0 0 KYLE BRINKMAN DIRECTOR 1.00 X 0 0 0 CHRISSY FLEXER DIRECTOR 1.00 X 0 0 0 NADINE GROSSMAN DIRECTOR 1.00 X 0 0 0 KERRY HUESTON DIRECTOR 1.00 X 0 0 0 HOLLIE SCHMIDT DIRECTOR 1.00 X 0 0 0 MICHELLE DAVIS EXECUTIVE DIRECTOR 40.00 X 198735 0 9359 DANIELLE KERKOVICH RESEARCH DIRECTOR 40.00 X 154341 0 9359 SAMANTHA KILE REAL WORLD EVIDENCE MANAGER 40.00 X 123997 0 357 477073 0 19075 3 0 1 0 0 5395 399858 1280595 1685848 PROGRAM SERVICE FEES 541700 123734 123734 EVENT REGISTRATION 541700 14133 14133 137867 104288 104288 458366 466858 -8492 -8492 -8492 9740 399858 124488 -114748 -114748 MISCELLANEOUS REVENUE 541700 5267 5267 5267 1810030 143134 0 -18952 X 524344 524344 6725 6725 326131 326131 208094 145666 39538 22890 651546 467772 97832 85942 15398 15398 66291 47687 9672 8932 9337 7819 920 598 76024 76024 6608 6608 697732 614696 33614 49422 1603 583 654 366 49036 29422 17139 2475 171631 147025 10418 14188 11421 3811 7610 135073 121386 6641 7046 147163 110636 36527 82581 79519 838 2224 8316 2036 5954 326 PRINTING AND PUBLICATIO 30501 15180 603 14718 BAD DEBT EXPENSE 27000 0 27000 0 POSTAGE AND SHIPPING 19243 9215 788 9240 REGISTRATION FEES 15298 2190 338 12770 30988 8803 19468 2717 3318084 2670646 406976 240462 732118 295849 58304 59632 631166 214600 167057 46946 18443 106427 6003 5781 444 222 3233300 3283354 235995 165005 5076827 4172035 224880 378260 77949 0 0 255000 302829 633260 X 2352329 1978708 2421669 1560067 4773998 3538775 5076827 4172035 -1508054 272831 0 X X 0 1 X 1 0 X 3225088 2523785 3155551 2944223 1685848 13534495 3225088 2523785 3155551 2944223 1685848 13534495 4542106 8992389 85227 81346 59090 63944 104288 393895 13928390 581733 0.64560 0.72610 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 6003 5781 222 222 2211647 272831 128786 401617 1810030 0 1810030 3446870 128786 128786 3318084 0 3318084 1 0 0 0 0 0 0 0 0 0 SUB-SAHARAN AFRICA - ANGOLA, BENIN, BOTSWANA, BURKINA FASO, FOP OUTREACH 207034 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM FOP RESEARCH 90000 0 0 2 HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS SUB-SAHARAN AFRICA - ANGOLA, BENIN, BOTSWANA, BURKINA FASO, 1 495 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, 7 8447 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, 1 323 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 1 885 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS MIDDLE EAST AND NORTH AFRICA - ALGERIA, BAHRAIN, DJIBOUTI, EGYPT, 1 1407 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIU 1 1800 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS CENTRAL AMERICA AND THE CARIBBEAN - ANTIGUA & BARBUDA, ARUBA, BAHAMAS, 1 714 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV FOP RESEARCH STIPEND EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIU 1 949 PRINTING FOR FOP PUBLICATIONS FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 1 1800 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 1 364 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 1 1737 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS MIDDLE EAST AND NORTH AFRICA 2 1248 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS CENTRAL AMERICA AND THE CARIBBEAN 1 1800 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 1 900 L.I.F.E. AWARD RECIPIENTS RECEIVE UP TO A $1,800 GRANT TO PURCHASE FMV 0 0 0 0 0 0 PART I, LINE 2 ACT FOR FOP AND OTHER RESEARCH GRANT AWARDS MADE OUTSIDE OF THE US REQUIRE GRANT AGREEMENTS AND REGULAR REPORTING ON PROGRESS. L.I.F.E. AWARDS PURCHASE ITEMS DIRECTLY FOR INDIVIDUALS WITH FOP, INSTEAD OF MAKING DIRECT PAYMENTS. PURSUIT OF A CURE 354247 354247 114364 ZIPPERQ 45338 38788 6550 905 3998 1 10013 6823 3190 5221 409598 399858 9740 905 123583 124488 -114748 0 UNIVERSITY OF PENNSYLVANIA 2929 WALNUT STREET PHILADELPHIA PA 19104 231352685 325000 0 RESEARCH UNIVERSITY OF MASSACHUSETTS 55 LAKE AVENUE NORTH WORCESTER MA 01655 542084125 167000 0 RESEARCH EMORY UNIVERSITY 1599 CLIFTON ROAD ATLANTA GA 30322 580566256 32344 0 RESEARCH 3 HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS 4 4282 FMV L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES THAT IMPROVE THEIR QUALIFY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. DENTAL CARE STIPEND PROGRAM 3 2442 FMV TRAVEL FOR DENTAL CARE X X 0 0 0 0 0 0 0 0 0 MICHELLE DAVIS EXECUTIVE DIRECTOR 180644 0 18091 0 0 0 0 0 9359 0 208094 0 0 0 DANIELLE KERKOVICH RESEARCH DIRECTOR 154341 0 0 0 0 0 0 0 9359 0 163700 0 0 0 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. FORM 990, PART IX, LINE 11G COMMUNICATIONS: PROGRAM SERVICE EXPENSES 96,150. MANAGEMENT AND GENERAL EXPENSES 12,310. FUNDRAISING EXPENSES 26,815. TOTAL EXPENSES 135,275. OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 476,901. MANAGEMENT AND GENERAL EXPENSES 19,365. FUNDRAISING EXPENSES 19,000. TOTAL EXPENSES 515,266. PAYROLL PROCESSING: PROGRAM SERVICE EXPENSES 3,275. MANAGEMENT AND GENERAL EXPENSES 741. FUNDRAISING EXPENSES 1,181. TOTAL EXPENSES 5,197. CONTRACT EMPLOYEES: PROGRAM SERVICE EXPENSES 38,370. MANAGEMENT AND GENERAL EXPENSES 1,198. FUNDRAISING EXPENSES 2,426. TOTAL EXPENSES 41,994. 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.