2024-11-07T13:00:57-06:00 2023-12-31 450250958 EIDE BAILLY LLP 810 S CINCINNATI AVE STE 600 TULSA OK 741191623 990 2023-01-01 273646193 GLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS GLOB 9189985798 PO BOX 33238 TULSA OK 74153 MELISSA BRYCE EXECUTIVE DIRECTOR 9182307713 2024-11-06 1 1 CHANDRA VENABLE CPA P00104736 9187485000 2024-11-06 2023 2024-10-15 13:58:12Z RYAN MAPLE 5663 SOUTH PITTSBURG AVENUE TULSA OK 741357812 704996 0 X WWW.THEGFPD.ORG X 2010 OK THE GLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS IS DEDICATED TO IMPROVING THE LIVES OF INDIVIDUALS WITH PEROXISOMAL DISORDERS BY FUNDING RESEARCH, CHAMPIONING SCIENTIFIC COLLABORATION, AND EMPOWERING FAMILIES AND PROFESSIONALS THROUGH EDUCATIONAL PROGRAMS AND SUPPORT SERVICES. 19 19 2 45 0 0 799711 643524 0 0 4748 7267 11395 9742 815854 660533 31544 59652 0 0 102406 121326 0 0 37710 1016074 659160 1150024 840138 -334170 -179605 851736 680018 47958 39939 803778 640079 X THE MISSION OF THE GLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS IS TO IMPROVE THE LIVES OF INDIVIDUALS WITH PEROXISOMAL DISORDERS BY FUNDING RESEARCH, CHAMPIONING SCIENTIFIC COLLABORATION, AND EMPOWERING FAMILIES AND PROFESSIONALS THROUGH EDUCATIONAL PROGRAMS AND SUPPORT SERVICES. 0 0 308935 1678 EMPOWERING FAMILIESIN 2023, THE GFPD WAS ONE OF ONLY SEVEN ORGANIZATIONS SELECTED BY THE FDA TO PARTICIPATE IN AN EXTERNALLY LED-PATIENT FOCUSED DRUG DEVELOPMENT (EL-PFDD) MEETING THE FOLLOWING YEAR, WHICH WAS THEN SCHEDULED AS PART OF THE 2024 FAMILY AND SCIENTIFIC CONFERENCE. EL-PFDD MEETINGS ALLOW FDA REPRESENTATIVES TO LISTEN TO PATIENTS AND CAREGIVERS ABOUT THEIR PERSPECTIVES ON MEDICAL CONDITIONS LIKE PEROXISOMAL DISORDERS. THESE MEETINGS HAVE A HEAVY EMPHASIS ON THE SYMPTOMS AND THE DAILY IMPACTS, AND PATIENTS SHARE FIRST-HAND WHAT KIND OF TREATMENTS WOULD MOST IMPROVE THEIR QUALITY OF LIFE. IN PREPARATION FOR THIS INCREDIBLE OPPORTUNITY, THE GFPD PLANNED TO HOST THREE FOCUS GROUPS WITH ITS PATIENTS, CAREGIVERS, AND FAMILIES IN 2023 TO SHAPE OUR DISCUSSION WITH THE FDA IN 2024. WITH LIMITED SEATS AVAILABLE IN EACH SESSION, THE NUMBER OF FAMILIES SEEKING TO ACTIVELY PARTICIPATE IN THESE FOCUS GROUPS RESULTED IN THE ADDITION OF A FOURTH GROUP. 268894 59652 RESEARCH AND MEDICINE:THE GFPD MAINTAINS A STRONG COMMITTEE OF PHYSICIANS AND SCIENTISTS ON OUR MEDICAL AND SCIENTIFIC ADVISORY BOARD. THESE INDIVIDUALS COMPRISE RESEARCHERS, CLINICIANS AND EXPERTS FROM NORTH AMERICA AND EUROPE THAT TREAT AND ASSIST PATIENTS WITH PEROXISOMAL DISORDERS THROUGH CLINICAL MEDICINE AND RESEARCH. THE GFPD HAS AWARDED A NUMBER OF GRANTS FOR FURTHER RESEARCH INCLUDING NATURAL HISTORY STUDY, MOUSE MODEL RESEARCH AND ACCESS TO GENETIC COUNSELING AND INFORMATION. PRIMARY RESEARCH PARTNERS INCLUDE MCGILL UNIVERSITY, BAYLOR COLLEGE OF MEDICINE, UNIVERSITY OF SOUTHERN CALIFORNIA, UNIVERSITY OF AMSTERDAM, THE KENNEDY KRIEGER INSTITUTE AND MONTCLAIR STATE UNIVERSITY. ADDITIONALLY, THE GFPD HAS CLINICAL ADVISORS FROM A NUMBER OF CHILDREN'S HOSPITALS THROUGHOUT NORTH AMERICA. TO FURTHER GFPD AWARENESS AND NETWORKING, REPRESENTATIVES HELD MEETINGS WITH THE NATIONAL ORGANIZATION FOR RARE DISORDERS, THE AMERICAN COLLEGE OF MEDICAL GENETICS, THE NOTRE DAME RARE DISEASE SYMPOSIUM, THE WORLD ORPHAN DRUG CONGRESS, AND THE AMERICAN ASSOCIATION FOR THE STUDY OF LIVER DISEASE 94276 ADVOCACYTHE GFPD HOSTED A LARGE CONTINGENT OF FAMILIES AND REPRESENTATIVES IN WASHINGTON DC FOR RARE DISEASE WEEK, MANY OF WHOM SPOKE ON CAPITOL HILL WITH THEIR RESPECTIVE STATE LEGISLATORS. THROUGHOUT THE YEAR, THE GFPD ALSO HOSTED OVER 30 VIRTUAL MEET-UPS, WEBINARS AND SUPPORT GROUPS FOR PARENTS AND CAREGIVERS. THESE VIRTUAL EVENTS INCREASE HEALTH LITERACY AND RESULT IN BETTER CLINICAL OUTCOMES FOR PATIENTS, LINKAGE TO CARE PROVIDERS ACROSS THE COUNTRY. OUR VIRTUAL EVENTS ALSO PROVIDE NECESSARY EMOTIONAL AND BEHAVIORAL SUPPORTS FOR CAREGIVERS AND ASSIST IN ADVOCACY AND POLICY CHANGE FOR RARE DISEASE PATIENTS. 40240 SCIENTIFIC COLLABORATIONTHE GFPD HAS PARTNERED WITH OKLAHOMA STATE UNIVERSITY TO IMPLEMENT A TELEECHO PROGRAM FOCUSED ON PEROXISOMAL DISORDERS AND RARE DISEASES. THIS THREE-YEAR PILOT PROGRAM WILL HELP BRIDGE COMMUNICATIONS BETWEEN PATIENT FAMILIES AND CAREGIVERS WITH SCIENTISTS, RESEARCHERS, AND MEDICAL PROFESSIONALS, AS WELL AS PARAPROFESSIONALS, IN ORDER TO STRENGTHEN NETWORK SUPPORTS AND IMPROVE PATIENT HEALTH OUTCOMES. THE ECHO MODEL CREATES A VIRTUAL COMMUNITY WHERE SPECIALISTS, RESEARCHERS, AND MEDICAL PROFESSIONALS FROM AROUND THE WORLD ENGAGE IN DISCUSSIONS ABOUT SPECIFIC MEDICAL CASES AND OFFER FEEDBACK. EXPERT KNOWLEDGE AND BEST PRACTICES ARE MADE ACCESSIBLE TO COMMUNITY HEALTH CARE PROVIDERS TO INCORPORATE INTO THEIR PRACTICES REGARDLESS OF WHERE THEY ARE LOCATED. THE ECHO MODEL DISSEMINATES EXPERT KNOWLEDGE, EMPOWERING PRACTITIONERS, PATIENTS, AND THEIR FAMILIES THROUGH OPTIMAL HEALTHCARE. 40240 712345 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 0 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 18 0 1 2 1 0 0 0 0 0 0 0 0 0 0 0 0 X 19 19 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 1 1 1 0 0 AL AR CA CO CT DC FL GA HI IL KS KY MA MD ME MI MN MS NC NJ NM NY OH OK OR PA RI SC TN UT VA WA WI WV NH X JACKIE BROOKS 9187485000 810 S CINCINNATI AVE STE 600 TULSA OK 741191623 CHRIS OSTERTAG CHAIR 1.00 X X 0 0 0 RYAN MAPLE VICE CHAIR, TREASURER 1.00 X X 0 0 0 CHAD JOHNSON SECRETARY 1.00 X X 0 0 0 ANDREW LONGENECKER DIRECTOR 0.50 X 0 0 0 BRIAN TIMS CPA DIRECTOR 0.50 X 0 0 0 CHARINA RAMIREZ DIRECTOR 0.50 X 0 0 0 CHRISTINE QUINN DIRECTOR 0.50 X 0 0 0 CORIN CHAPMAN DIRECTOR 0.50 X 0 0 0 DAN BURNS DIRECTOR 0.50 X 0 0 0 DAVID LAPIDUS DIRECTOR 0.50 X 0 0 0 ISABELLA PINA DIRECTOR 0.50 X 0 0 0 JULIE GACNIK DIRECTOR 0.50 X 0 0 0 KELLY DAUER-HUBSCHMITT DIRECTOR 0.50 X 0 0 0 KIM MARTINELLI DIRECTOR 0.50 X 0 0 0 LAUREN DRAPER DIRECTOR 0.50 X 0 0 0 MADELEINE CORRIGAN DIRECTOR 0.50 X 0 0 0 MEGHAN MEYERS DIRECTOR 0.50 X 0 0 0 NATALIE CLOUSE DIRECTOR 0.50 X 0 0 0 SARA KEAR DIRECTOR 0.50 X 0 0 0 MELISSA BRYCE EXECUTIVE DIRECTOR 40.00 X 85000 0 10836 85000 0 10836 0 0 0 0 0 274646 368878 21000 643524 7812 7812 305 240 -305 -240 -545 -240 -305 50886 274646 43062 7824 7824 1969 856 1113 1113 OTHER INCOME 812900 805 805 805 660533 1678 0 15331 X 59652 59652 95836 81460 9584 4792 16716 16716 722 722 8052 8052 145085 145085 60197 36010 16178 8009 1014 1014 136460 82091 41143 13226 2733 10 587 2136 90449 72431 13687 4331 30860 27449 856 2555 6641 5280 578 783 81940 76697 4619 624 9615 9007 608 3339 2706 367 266 5188 4205 570 413 EDUCATION VIDEOS 61617 61617 IN KIND SUPPLIES 21000 21000 OTHER EXPENSES 3022 2155 292 575 840138 712345 90083 37710 163741 138265 431148 78956 5000 0 22534 24076 1164 2161 26973 40684 20363 11397 6022 8966 195154 386910 851736 680018 47958 39939 47958 39939 X 372630 342559 431148 297520 803778 640079 851736 680018 -179605 15906 0 X 0 1 X 1 0 X 583884 467235 688588 799711 643524 3182942 583884 467235 688588 799711 643524 3182942 518892 2664050 11885 3109 2090 4748 7507 29339 1595 5854 805 8254 3220535 10766 0.82720 0.83260 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER INCOME RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 20363 11397 8966 8966 X 675426 15906 1 15907 659519 1014 1014 660533 839125 1 1 839124 1014 1014 840138 PART X, LINE 2: THE FOUNDATION HAS EVALUATED IF THERE ARE ANY UNCERTAIN TAX POSITIONS. NO UNCERTAIN TAX POSITIONS WERE IDENTIFIED. THE FOUNDATION HAD NO ACCRUED INTEREST OR PENALTIES RELATING TO ANY TAX CONTINGENCIES. ANY TAX, PENALTY, OR INTEREST WHICH MIGHT RESULT FROM AN EXAMINATION WILL BE INCLUDED IN OPERATING EXPENSE, IF INCURRED. GENERALLY, THE FOUNDATION'S TAX INFORMATION FORMS REMAIN OPEN FOR THREE YEARS FOR EXAMINZATION BY TAXING AUTHORITIES. PART XI, LINE 2D - OTHER ADJUSTMENTS: ROUNDING 1. PART XII, LINE 2D - OTHER ADJUSTMENTS: ROUNDING 1. TEE IT UP 190574 153924 36650 6597 14902 8308 500 HOPE WITH LO 5K 83347 77607 5740 3968 102 2 51611 43115 8496 1607 898 1162 2500 2518 325532 274646 50886 12172 15800 9470 3000 2620 43062 7824 1 KENNEDY KRIEGER UNIVERSITY 707 NORTH BROADWAY BALTIMORE MD 21205 521734695 OTHER EXEMPT ENTITY 25000 0 BOOK RESEARCH GRANT GENERAL FUND MONTCLAIR STATE UNIVERSITY 1 NORMAL AVENUE MONTCLAIR NJ 07043 222912682 OTHER EXEMPT ENTITY 21710 0 BOOK RESEARCH GRANT GENERAL FUND OKLAHOMA STATE UNIVERSITY 400 SOUTH MONROE STILLWATER OK 74074 731383996 OTHER EXEMPT ENTITY 12942 0 BOOK RESEARCH SUPPORT GENERAL FUND 1 2 X PROMOTIONS 1 21000 FAIR VALUE 0 1 0 FORM 990, PART VI, SECTION A, LINE 8B THE ORGANIZATION DOES NOT HAVE A COMMITTEE WITH AUTHORITY TO ACT ON BEHALF OF THE GOVERNING BODY. FORM 990, PART VI, SECTION B, LINE 11B FINANCIAL STATEMENTS WERE PREPARED BY THE GFPD CFO AND AUDITED BY AN INDEPENDENT AUDITOR. THESE FINANCIAL STATEMENTS WERE REVIEWED BY THE BOARD AND THE FINANCE COMMITTEE AND USED TO PREPARE THE 990. THE 990 IS PREPARED BY AN OUTSIDE FIRM AND THEN REVIEWED BY THE EXECUTIVE DIRECTOR AND FINANCE COMMITTEE, WHICH IS THEN SUBMITTED TO THE BOARD FOR FINAL REVIEW AND APPROVAL BEFORE THE 990 IS FILED. FORM 990, PART VI, SECTION B, LINE 12C BOARD MEMBERS ARE GIVEN AN ANNUAL CONFLICT OF INTEREST STATEMENT THAT THEY REVIEW AND SIGN. THE GFPD CFO REVIEWS ANY CONFLICTS AND ANY POTENTIAL CONFLICTS AS INVOICES ARE PAID AND BUSINESS IS BEING TRANSACTED. FORM 990, PART VI, SECTION B, LINE 15A PROCESS FOR DETERMINING COMPENSATION IS BASED ON THE NONPROFIT SALARY SURVEY PUBLISHED BY THE NATIONAL COUNCIL OF NONPROFITS. FORM 990, PART VI, SECTION C, LINE 19 DOCUMENTS ARE AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G ADMINISTRATIVE SUPPORT: PROGRAM SERVICE EXPENSES 14,147. MANAGEMENT AND GENERAL EXPENSES 35,183. FUNDRAISING EXPENSES 10,866. TOTAL EXPENSES 60,196. MEMBERSHIP FEES: PROGRAM SERVICE EXPENSES 1,427. MANAGEMENT AND GENERAL EXPENSES 59. FUNDRAISING EXPENSES 43. TOTAL EXPENSES 1,529. PAYROLL SERVICE FEES: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 1,221. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 1,221. DEVELOPMENT CONTRACTOR: PROGRAM SERVICE EXPENSES 23,003. MANAGEMENT AND GENERAL EXPENSES 4,680. FUNDRAISING EXPENSES 2,317. TOTAL EXPENSES 30,000. OTHER SERVICES: PROGRAM SERVICE EXPENSES 43,514. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 43,514. HUES FOR HOPE PO BOX 33238 TULSA OK 74153 934752387 INSPIRE JOY IN THE LIVES OF FAMILIES FACING RARE DISEASES THROUGH ART OK 501(C)(3) LINE 12A, I 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0