2025-11-11T07:09:31-06:00 2024-12-31 430765316 RUBINBROWN LLP 1200 MAIN STREET SUITE 1000 KANSAS CITY MO 64105 990 2024-01-01 592918100 INTERNATIONAL FOP ASSOCIATION INC INTE 4073654194 1520 CLAY ST STE H2 NORTH KANSAS CITY MO 64116 MICHELLE DAVIS EXECUTIVE DIRECTOR 4073654194 2025-11-05 1 1 KIMBERLY A RYAN P00829977 8164721122 2024 2025-03-06 01:10:19Z MICHELLE DAVIS 1520 CLAY ST STE H2 NORTH KANSAS CITY MO 64116 3279173 0 X WWW.IFOPA.ORG X 1988 MO TO SUPPORT AND CONNECT THE GLOBAL FOP COMMUNITY WHILE DRIVING RESEARCH TOWARD TREATMENTS AND A CURE. 11 11 0 150 0 0 1685848 2085169 137867 51668 95796 274851 -109481 9899 1810030 2421587 857200 596971 0 0 941329 959308 6608 0 256345 1512947 1548764 3318084 3105043 -1508054 -683456 4172035 3492725 633260 630798 3538775 2861927 X TO SUPPORT AND CONNECT THE GLOBAL FOP COMMUNITY WHILE DRIVING RESEARCH TOWARD TREATMENTS AND A CURE. 0 0 1669094 596971 153386 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. 701063 0 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. 115702 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. 2485859 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 18 0 1 0 1 0 0 0 0 1 1 1 1 0 0 0 0 0 0 X 11 11 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 REBECCA WALLACE CHAIR 1.00 X X 0 0 0 NADINE GROSSMAN VICE CHAIR 1.00 X X 0 0 0 EMMA ALBEE SECRETARY 1.00 X X 0 0 0 JAMAL PORTER 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 SUE KAHN DIRECTOR 1.00 X 0 0 0 MOLLY RHODES DIRECTOR 1.00 X 0 0 0 MANUEL ROBERT DIRECTOR 1.00 X 0 0 0 HOLLIE SCHMIDT EXECUTIVE COMMITTE MEMBER-AT-LARGE 1.00 X 0 0 0 MICHELLE DAVIS EXECUTIVE DIRECTOR 40.00 X 203218 0 9510 SAMANTHA KILE REAL WORLD EVIDENCE MANAGE 40.00 X 134260 0 381 337478 0 9891 2 0 1 0 0 747 560531 1523891 2085169 EVENT REGISTRATION 541700 45168 45168 PROGRAM SERVICE FEES 541700 6500 6500 51668 90028 90028 948936 764113 184823 184823 184823 1654 560531 93473 -91819 -91819 MISCELLANEOUS REVENUE 541700 101718 101718 101718 2421587 153386 0 183032 X 471446 471446 4441 4441 121084 121084 212728 144655 46800 21273 657392 473844 65432 118116 20998 -4971 26547 -578 68190 49314 7760 11116 7274 5553 1395 326 75915 75915 463741 391995 34935 36811 672 210 225 237 35583 16601 17965 1017 301362 275149 8007 18206 8763 8763 138018 120271 15576 2171 325476 315617 9859 51329 48883 222 2224 8067 2237 5373 457 PRINTING AND PUBLICATIO 34937 16889 184 17864 REGISTRATION FEES 20399 2952 4804 12643 POSTAGE AND SHIPPING 19721 4730 585 14406 CREDIT CARD PROCESSING 19291 106 19185 0 38216 24853 13307 56 3105043 2485859 362839 256345 295849 248635 59632 13862 214600 382254 46946 91238 106427 67739 6003 6003 222 0 3283354 2559480 165005 129517 4172035 3492725 378260 351798 255000 279000 633260 630798 X 1978708 1767011 1560067 1094916 3538775 2861927 4172035 3492725 -683456 6608 0 X X 0 1 X 1 0 X 2523785 3155551 2944223 1685848 2085169 12394576 2523785 3155551 2944223 1685848 2085169 12394576 3962080 8432496 81346 59090 63944 104288 90028 398696 12793272 673856 0.65910 0.64560 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 6003 6003 0 0 2591665 6608 163470 170078 2421587 0 2421587 3268513 163470 163470 3105043 0 3105043 1 0 0 0 0 0 0 0 0 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM FOP RESEARCH 90000 0 0 1 HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS SOUTH AMERICA 5 2373 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS NORTH AMERICA 1 1484 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS SOUTH AMERICA 3 2481 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 2 1900 1039 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS SUB-SAHARAN AFRICA 1 432 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS SOUTH ASIA 1 228 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS MIDDLE EAST AND NORTH AFRICA 1 1863 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 1 1133 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 2 3881 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS NORTH AMERICA 4 1582 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS SOUTH ASIA 1 850 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS CENTRAL AMERICA AND THE CARIBBEAN 3 604 869 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 1 1866 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS SUB-SAHARAN AFRICA 3 4668 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 1 1050 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 1 1801 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 2 980 L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. FMV 0 0 0 0 0 0 PART I, LINE 2: INTERIM AND FINAL REPORTS ARE REQUESTED FROM GRANTEES PRIOR TO PAYING OUT INTERIM AND FINAL GRANT PAYMENTS. THIS INCLUDES A SCIENTIFIC REPORT AND A FINANCIAL REPORT. PART I, LINE 2 ACT FOR FOP AND OTHER RESEARCH GRANT AWARDS MADE OUTSIDE OF THE US REQUIRE GRANT AGREEMENTS AND REGULAR REPORTING. INTERIM AND FINAL REPORTS ARE REQUESTED FROM GRANTEES PRIOR TO PAYING OUT INTERIM AND FINAL GRANT PAYMENTS. THIS INCLUDES A SCIENTIFIC REPORT AND A FINANCIAL REPORT. L.I.F.E. AWARDS PURCHASE ITEMS DIRECTLY FOR INDIVIDUALS WITH FOP, INSTEAD OF MAKING DIRECT PAYMENTS, EXCEPT IN RARE SITUATIONS WHERE THE ITEM PURCHASE BY A US-ENTITY IS NOT POSSIBLE. PURSUIT OF A CURE 546080 546080 87914 ZIPPERQ 16105 14451 1654 5559 562185 560531 1654 93473 93473 -91819 0 UNIVERSITY OF PENNSYLVANIA 2929 WALNUT STREET PHILADELPHIA PA 19104 231352685 275000 0 RESEARCH UNIVERSITY OF MASSACHUSETTS 55 LAKE AVENUE NORTH WORCESTER MA 01655 542084125 83000 0 RESEARCH EMORY UNIVERSITY 1599 CLIFTON ROAD ATLANTA GA 30322 580566256 19697 0 RESEARCH BRIGHAM AND WOMEN'S HOSPITAL INC 75 FRANCIS BOSTON MA 02115 042312909 65250 0 RESEARCH MASS GENERAL BRIGHAM INCORPORATED 55 FRUIT STREET BOSTON MA 02114 042697983 28000 0 RESEARCH 5 0 HAROLD & ELAINE KAPLAN QUALITY OF L.I.F.E. AWARDS 5 4287 FMV L.I.F.E. AWARD RECIPIENTS RECEIVE A $1,800 GRANT TO PURCHASE ITEMS/SERVICES/TUITION THAT IMPROVE THEIR QUALITY OF LIFE. ITEMS/SERVICES ARE PURCHASED DIRECTLY BY THE IFOPA (WITH THE EXCEPTION OF RARE SITUATIONS WHERE DIRECT PURCHASE BY A US-ENTITY ISN'T POSSIBLE INTERNATIONALLY) AND THEN GIVEN TO RECIPIENTS. RECIPIENTS MAY CHOOSE TO USE THEIR GRANT ALL AT ONCE OR IN INCREMENTS. DENTAL CARE STIPEND PROGRAM 1 154 FMV TRAVEL FOR DENTAL CARE X X 0 0 0 0 0 0 0 0 0 MICHELLE DAVIS EXECUTIVE DIRECTOR 188218 0 15000 0 0 0 0 0 9510 0 212728 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 12 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 WHEN VENDOR RELATIONSHIPS ARE ESTABLISHED, THEY ARE COMPARED TO ALL BOARD AND STAFF CONFLICTS OF INTEREST TO ENSURE THERE IS NO RELATIONSHIP WITH A BOARD OR STAFF MEMBER. THIS ALSO APPLIES TO FAMILY RELATIONSHIPS IN THE COMMUNITY. 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 66,326. MANAGEMENT AND GENERAL EXPENSES 7,150. FUNDRAISING EXPENSES 27,668. TOTAL EXPENSES 101,144. OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 2,305. MANAGEMENT AND GENERAL EXPENSES 22,357. FUNDRAISING EXPENSES 2,993. TOTAL EXPENSES 27,655. PAYROLL PROCESSING: PROGRAM SERVICE EXPENSES 3,850. MANAGEMENT AND GENERAL EXPENSES 760. FUNDRAISING EXPENSES 1,258. TOTAL EXPENSES 5,868. CONTRACT EMPLOYEES: PROGRAM SERVICE EXPENSES 319,514. MANAGEMENT AND GENERAL EXPENSES 4,668. FUNDRAISING EXPENSES 4,892. TOTAL EXPENSES 329,074. 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.