2025-11-13T14:13:03-06:00 2024-12-31 450250958 EIDE BAILLY LLP 810 S CINCINNATI AVE STE 600 TULSA OK 741191623 990 2024-01-01 273646193 GLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS GLOB 9189985798 PO BOX 33238 TULSA OK 74153 RYAN MAPLE EXECUTIVE DIRECTOR 9182307713 2025-11-12 1 0 CHANDRA VENABLE CPA P00104736 9187485000 2025-11-12 2024 2025-03-06 01:10:19Z RYAN MAPLE 5663 SOUTH PITTSBURG AVENUE TULSA OK 741357812 745845 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 3 120 0 0 643524 671239 0 16050 7267 3049 9742 32641 660533 722979 59652 92768 0 0 121326 377140 0 0 167132 659160 724614 840138 1194522 -179605 -471543 680018 254047 39939 78424 640079 175623 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 617916 24152 FAMILY AND SCIENTIFIC CONFERENCETHE 2024 FAMILY AND SCIENTIFIC CONFERENCE WAS HELD IN WASHINGTON, D.C., WHERE THE GFPD HOSTED THE FDA FOR AN EXTERNALLY-LED PATIENT-FOCUSED DRUG DEVELOPMENT (EL-PFDD) MEETING. THE MEETING WAS ATTENDED BY 281 INDIVIDUALS, INCLUDING 35 DIAGNOSED PATIENTS, 82 PRIMARY CAREGIVERS, AND OTHER ADVOCATES AND PROFESSIONALS. THIS MEETING WAS THE FOCAL POINT OF THE CONFERENCE AND UNDERSCORED THE NEED FOR BETTER TREATMENTS THAT ADDRESS THE BROAD SYMPTOMS AND IMPACTS OF PEROXISOMAL DISORDERS. A FINAL VOICE OF THE PATIENT REPORT WILL BE PUBLISHED IN 2025 AS AN ANALYSIS OF THE EL-PFDD MEETING. THE CONFERENCE ALSO PROVIDED FAMILIES WITH MEDICAL AND RESEARCH UPDATES FROM OUR MEDICAL AND SCIENTIFIC ADVISORY BOARD (MSAB), AS WELL AS ONE-ON-ONE PROFESSIONAL POP-INS WITH MANY OF THE MSAB MEMBERS. 275789 92768 RESEARCH AND MEDICINETHE GFPD CONTINUES TO MAINTAIN AND GROW A STRONG COMMITTEE OF PHYSICIANS AND SCIENTISTS AS PART OF OUR MSAB. THESE INDIVIDUALS CURRENTLY COMPRISE RESEARCHERS, CLINICIANS, AND EXPERTS FROM NORTH AMERICA AND EUROPE WHO TREAT AND ASSIST PEROXISOMAL PATIENTS THROUGH CLINICAL MEDICINE AND RESEARCH. 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, GLOBAL GENES, 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. 34098 WEBINAR AND VIRTUAL EVENT SERIESTHE GFPD IS THE PREMIER RESOURCE FOR INFORMATION, CLINICAL DIRECTION, TREATMENT GUIDELINES, NETWORKING, MEDICAL LINKAGE, AND ONLINE LEARNING FOR PATIENTS, FAMILIES, CAREGIVERS, CLINICIANS, PHYSICIANS, AND SCIENTIFIC PROFESSIONALS WITH A RANGE OF FAMILIARITY AND EXPERTISE IN PEROXISOMAL DISORDERS AND THEIR CO-MORBIDITIES. ONE OF THE GFPD'S FLAGSHIP PROGRAMS IS ITS WEBINAR AND VIRTUAL EVENT SERIES. THIS PROGRAM PROVIDES YEAR-ROUND EVENTS FOR PATIENTS, FAMILIES, AND PROFESSIONALS. THE PROGRAM IS OFFERED AT NO COST TO PATIENTS, FAMILIES, AND CAREGIVERS, AND PROVIDES CRUCIAL SUPPORT, EDUCATION, ADVOCACY TOOLS, AND RESOURCES. THE VIRTUAL ENVIRONMENT ENABLES MORE FLEXIBILITY IN SCHEDULING, RECORDING, AND DISSEMINATING INFORMATION TO PATIENTS, FAMILIES, AND CAREGIVERS, WHICH INCREASES ACCESS TO OUR COMMUNITY. THE GFPD WEBINAR AND VIRTUAL EVENT SERIES PROVIDES OPPORTUNITIES FOR CONSISTENT AND DIRECT ENGAGEMENT WITH THE COMMUNITY WE SERVE, AND SHAPES OUR STRATEGY FOR IMPROVING WEBINARS, OTHER FAMILY PROGRAMS, AND RESEARCH COLLABORATIONS. IN OCTOBER, A FIRST-TIME EVENT PROVED THE PERFECT EXAMPLE OF THE IMPACT OF VIRTUAL WEBINARS AND EVENTS. A "RELAX AND RELATE" VIRTUAL GATHERING WAS HOSTED FOR OUR EXTREMELY SMALL ADULT PATIENT COMMUNITY, IN WHICH EIGHT INDIVIDUALS MET, MANY FOR THE FIRST TIME. THE PATIENTS SHARED THAT THEY HOPED TO GAIN A CONNECTION TO OTHERS, TO NOT FEEL ALONE," TO LEARN FROM ONE ANOTHER ABOUT THEIR EXPERIENCES, AND WHAT HAS AND HAS NOT HELPED WITH SYMPTOM MANAGEMENT. THERE WAS UNANIMOUS INTEREST IN PARTICIPATING IN FUTURE SIMILAR GATHERINGS, AS WELL AS HAVING THEMED TOPICS AND GUEST PRESENTERS ON VARIOUS SUBJECTS. OVERALL, IN 2024, THE GFPD HOSTED 28 EVENTS AND HAD AN AVERAGE NET PROMOTER SCORE OF 89.2. 927803 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 0 0 0 0 0 1 0 0 0 1 21 0 1 3 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 CHAD JOHNSON SECRETARY 1.00 X X 0 0 0 CORIN CHAPMAN VICE CHAIR 1.00 X X 0 0 0 RYAN MAPLE TREASURER 1/1 - 8/31 1.00 X X 0 0 0 SARA KEAR TREASURER 9/1-12/31 1.00 X X 0 0 0 NATALIE CLOUSE DIRECTOR 0.50 X 0 0 0 MADELINE CORRIGAN DIRECTOR 0.50 X 0 0 0 BRIAN TIMS DIRECTOR 0.50 X 0 0 0 KELLY DAUER-HUBSCHMITT DIRECTOR 0.50 X 0 0 0 DAVID LAPIDUS DIRECTOR 0.50 X 0 0 0 JULIE GACNIK DIRECTOR 0.50 X 0 0 0 ISABELLA PINA DIRECTOR 0.50 X 0 0 0 LAUREN DRAPER DIRECTOR 0.50 X 0 0 0 MEGHAN MEYERS DIRECTOR 0.50 X 0 0 0 ANDREW LONGENECKER DIRECTOR 0.50 X 0 0 0 DAN BURNS DIRECTOR 0.50 X 0 0 0 CHRISTINE QUINN DIRECTOR 0.50 X 0 0 0 CHARINA RAMIREZ DIRECTOR 0.50 X 0 0 0 KIM MARTINELLI DIRECTOR 0.50 X 0 0 0 MELISSA BRYCE DIRECTOR 9/1 - 12/31 0.50 X 0 0 0 MADELEINE BRYCE DIRECTOR OF DEVELOPMENT 40.00 X 76923 0 0 MELISSA BRYCE EXECUTIVE DIRECTOR 1/1-8/31 40.00 X 62115 0 0 RYAN MAPLE EXECUTIVE DIRECTOR 9/1-12/31 40.00 X 28442 0 0 167480 0 0 0 0 0 0 0 250291 420948 13600 671239 FAMILY AND SCIENTIFIC 611430 16050 16050 16050 3049 3049 47405 250291 22866 24539 24539 2788 0 2788 2788 OTHER INCOME 812900 5314 5314 5314 722979 24152 0 27588 92768 92768 167480 107743 16748 42989 178219 155204 5866 17149 18393 13990 1203 3200 13048 9924 854 2270 55671 55671 351 351 38559 21500 17059 16331 330 16001 128510 106867 1674 19969 74976 57105 492 17379 18022 11917 1355 4750 338765 326890 4141 7734 2960 1126 1777 57 2691 1700 269 722 2921 1846 292 783 FUNDRAISING EXPENSES 13096 58 13038 MEMBERSHIP FEES 6756 5373 376 1007 EDUCATION VIDEOS 5251 5251 19754 8541 8188 3025 1194522 927803 99587 167132 138265 192324 78956 24076 7503 2161 2161 40684 45784 20363 14088 8966 6275 386910 680018 254047 39939 78424 39939 78424 X 342559 175623 297520 0 640079 175623 680018 254047 X -471543 7084 3 X 0 1 X 1 0 X 467235 688588 799711 643524 671239 3270297 467235 688588 799711 643524 671239 3270297 413703 2856594 3109 2090 4748 7507 10133 27587 5854 805 5314 11973 3309857 29604 0.86310 0.82720 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER INCOME RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 20363 14088 6275 6275 X 729713 7084 1 7085 722628 351 351 722979 1194169 0 1194169 351 2 353 1194522 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 4B - OTHER ADJUSTMENTS: ROUNDING 2. TEE IT UP 215557 175912 39645 922 14276 3915 2491 HOPE WITH LO 5K 54424 46664 7760 1262 2 27715 27715 297696 250291 47405 2184 14276 3915 2491 22866 24539 1 MONTCLAIR STATE UNIVERSITY 1 NORMAL AVENUE MONTCLAIR NJ 07043 222912682 92768 0 PATIENT - FOCUSED DRUG DEVELOPMENT IN PEROXISOMAL DISORDERS 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 XI, LINE 9: ROUNDING 3. 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 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 HUES FOR HOPE C 41041