2024-05-06T11:07:05-05:00 2023-12-31 410746749 CLIFTONLARSONALLEN LLP 475 REGENCY PARK SUITE 175 OFALLON IL 62269 990 2023-01-01 371112496 NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS NATI 6185662020 6 EXECUTIVE DRIVE SUITE 2 FAIRVIEW HEIGHTS IL 62208 KARL NELSEN PRESIDENT 6185662020 2024-04-30 1 KARL NELSEN 999009999 0 JEFF PARKER P00970069 6182331200 2024-04-30 2 AAL1 IAL1 2023 2023-04-26 12:10:37Z KARL NELSEN 6 EXECUTIVE DRIVE SUITE 2 FAIRVIEW HEIGHTS IL 62208 1166587 0 X WWW.NFED.ORG X 1981 IL EMPOWER AND CONNECT PEOPLE TOUCHED BY ECTODERMAL DYSPLASIAS VIA EDUCATION, SUPPORT, & RESEARCH. 11 11 8 400 0 0 1170684 884423 24687 29121 254390 211660 43450 36201 1493211 1161405 25103 45033 0 0 641016 559064 0 0 104656 417751 475688 1083870 1079785 409341 81620 3999579 4529323 190948 156409 3808631 4372914 X TO EMPOWER AND CONNECT PEOPLE TOUCHED BY ECTODERMAL DYSPLASIAS THROUGH EDUCATION, SUPPORT, AND RESEARCH. 0 0 515209 33238 29121 SUPPORT - NFED PUBLISHES HIGH QUALITY INFORMATION TO PROVIDE FAMILIES WITH KNOWLEDGE THAT WILL INCREASE THEIR QUALITY OF LIFE. INFORMATION IS SHARED THROUGH THE FIRST CONNECT PROGRAM, A WEB SITE, MEDICAL/DENTAL GUIDE SERIES, AND CONFERENCES. THE NATIONAL FAMILY CONFERENCE IS THE NFED'S HALLMARK PROGRAM BRINGING ENTIRE FAMILIES TOGETHER TO LEARN, SHARE, AND NETWORK WITH ONE ANOTHER AND WITH EXPERT CARE PROVIDERS. AFFECTED CHILDREN AND THEIR SIBLINGS ATTEND KIDS CAMP AT THE CONFERENCES WHERE THEY PARTICIPATE IN EDUCATIONAL AND SOCIAL ACTIVITIES WITH OTHER CHILDREN LIKE THEM TO DEVELOP SELF-ESTEEM. THE NFED PROVIDES FINANCIAL ASSISTANCE TO INDIVIDUALS TO ATTEND THE FAMILY CONFERENCE. THE NFED'S FAMILY-TO-FAMILY NETWORK CONNECTS FAMILIES WITH A CARING LIAISON IN THEIR REGION WHO CAN PROVIDE MORAL SUPPORT, INFORMATION AND PRACTICAL ADVICE, GUIDANCE, AND RESOURCES. 255851 2491 0 TREATMENT - NFED'S PATIENT CARE COUNCIL, COMPRISED OF MEDICAL AND DENTAL EXPERTS, OVERSEES THE NFED'S INITIATIVES TO IMPROVE TREATMENT OF ECTODERMAL DYSPLASIAS. THE NFED TEACHES CARE PROVIDERS HOW TO DIAGNOSE AND TREAT THE RARE DISORDERS THROUGH PROFESSIONAL SYMPOSIA AND GRAND ROUNDS AT UNIVERSITIES. THE NFED ADVOCATES FOR IMPROVING ACCESS TO CARE WITH SPONSORING LEGISLATION TO COVER CONGENITAL ANOMALIES, AND COLLABORATING WITH UNIVERSITIES, GOVERNMENT, PATIENT HEALTH ORGANIZATIONS. AFFECTED INDIVIDUALS CAN RECEIVE MORE AFFORDABLE CARE FROM EXPERIENCED TEAMS OF DENTISTS IN TREATMENT OF ECTODERMAL DYSPLASIAS AT NFED DENTAL TREATMENT CENTERS IN THE U.S. THE NFED ALSO HELPS FAMILIES PAY FOR NEEDED CARE THROUGH THE TREATMENT ASSISTANCE PROGRAM AND INSURANCE COACHING 189119 9305 0 RESEARCH - NFED'S SCIENTIFIC ADVISORY COUNCIL OVERSEES THE NFED'S RESEARCH INITIATIVES, AIMED TO IMPROVE THE HEALTH AND QUALITY OF LIFE OF AFFECTED INDIVIDUALS BY FINDING MANAGEMENT SOLUTIONS AND, EVENTUALLY, FINDING CURES FOR ECTODERMAL DYSPLASIAS. THE NFED ADVANCES RESEARCH THROUGH ADVOCACY AND PARTNERSHIPS WITH ORGANIZATIONS SUCH AS THE NATIONAL INSTITUTE OF HEALTH. THE NFED PROVIDES SEEDS FUNDS TO RESEARCHERS, PROVIDES THEM WITH ACCESS TO AFFECTED INDIVIDUALS, AND SHARES INFORMATION TO LAUNCH LARGER PROJECTS. NFED IS DEVELOPING A WEB-BASED ECTODERMAL DYSPLASIAS INTERNATIONAL REGISTRY TO SERVE AS A REPOSITORY OF GENETIC AND CLINICAL INFORMATION AND FACILITATES COMMUNICATION AMONG SCIENTISTS WHO STRIVE TO ADVANCE RESEARCH ON ECTODERMAL DYSPLASIAS. THE NFED ALSO SPONSORS SCIENTIFIC MEETINGS TO INCREASE UNDERSTANDING OF THE DISORDERS. 960179 1 1 0 0 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 1 0 8 1 0 0 0 0 0 0 0 0 0 0 0 0 X 11 11 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 IL X X MARY FETE 6185662020 6 EXECUTIVE DRIVE STE 2 FAIRVIEW HEIGHTS IL 62208 X KARL NELSEN PRESIDENT 5.00 X X 0 0 0 CHARLES RICHTER DIRECTOR 1.00 X 0 0 0 KEITH THROM SECRETARY 1.00 X X 0 0 0 RICHARD STRATZ DIRECTOR 1.00 X 0 0 0 KRISTA BASILE DIRECTOR 1.00 X 0 0 0 ROY MOFFITT DIRECTOR 1.00 X 0 0 0 MARIANNE VERMEER TREASURER 1.00 X X 0 0 0 J TIMOTHY WRIGHT DDS MS DIRECTOR 1.00 X 0 0 0 ANIL VORA VICE PRESIDENT 10.00 X X 0 0 0 RUTH GEISMAR DIRECTOR 1.00 X 0 0 0 JACK KRIZ DIRECTOR 1.00 X 0 0 0 MARY FETE EXECUTIVE DIRECTOR 40.00 X 121124 0 0 121124 0 0 1 0 0 0 0 276559 607864 59225 884423 NATIONAL AND REGIONAL 624100 29121 29121 29121 48569 48569 163091 0 163091 163091 163091 38504 276559 5182 33322 33322 PROMOTIONAL ITEMS 624100 2879 2879 2879 1161405 29121 0 247861 45033 45033 505974 457611 7195 41168 9444 8542 134 768 3906 3532 56 318 39740 35942 565 3233 1024 840 10 174 47937 39308 480 8149 10492 8603 105 1784 64012 52489 641 10882 42204 35874 844 5486 28837 23646 289 4902 9765 8030 75 1660 9212 7554 92 1566 FAMILY CONFERENCES 124564 124564 ADVOCACY 67601 67601 DEVELOPMENT 42223 16889 4223 21111 MEMBERSHIPS 12507 10241 126 2140 15310 13880 115 1315 1079785 960179 14950 104656 772544 520864 1 547830 21575 17187 23467 9919 41323 41323 0 0 3060702 3336835 121290 96688 3999579 4529323 63558 46721 6100 13000 121290 96688 190948 156409 X 3655423 4317747 153208 55167 3808631 4372914 3999579 4529323 81620 487051 -4388 0 X X 0 1 X 1 0 X 823099 793549 1500948 1170684 884423 5172703 823099 793549 1500948 1170684 884423 5172703 352076 4820627 26429 24326 25780 36066 48569 161170 3652 207 803 3786 2679 11127 5345000 241831 0.90190 0.96020 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS - 2019 AMOUNT: $ 3,652. 2020 AMOUNT: $ 207. 2021 AMOUNT: $ 803. 2022 AMOUNT: $ 3,786. 2023 AMOUNT: $ 2,679. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 41323 41323 0 0 LEASE LIABILITY 96688 96688 X 1660416 487051 6778 5182 499011 1161405 0 1161405 1096133 11166 5182 16348 1079785 0 1079785 PART X, LINE 2: PER NOTE 1 OF THE AUDITED FINANCIAL STATEMENTS: TAX STATUS - THE FOUNDATION IS TAX-EXEMPT UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE AND, THEREFORE, IS EXEMPT FROM BOTH FEDERAL AND STATE INCOME TAXES. ACCORDINGLY, NO PROVISION HAS BEEN MADE FOR INCOME TAXES IN THE ACCOMPANYING FINANCIAL STATEMENTS. PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSE NETTED WITH REVENUE ON 990 5,182. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSE NETTED WITH REVENUE ON FORM 990 5,182. HALLOWEEN BASH 98014 75720 22294 5182 5 217049 200839 16210 315063 276559 38504 5182 5182 33322 1 TREATMENT FUNDING 3 2491 FAMILY CONFERENCE SCHOLARSHIPS 18 17988 STIPENDS AND TRAVEL ASSISTANCE - ADVOCACY DAY 28 15250 STIPENDS AND TRAVEL ASSISTANCE - RESEARCH 3 9304 PART I, LINE 2: FOR CLIENT ASSISTANCE, FUNDS ARE SENT DIRECTLY TO CARE PROVIDERS. X 1 59225 STOCK MARKET VALUE 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B THE ORGANIZATION PROVIDES A COPY OF FORM 990 TO EVERY BOARD MEMBER PRIOR TO FILING. IT IS REVIEWED IN DETAIL BY THE ORGANIZATION'S EXECUTIVE DIRECTOR AND BOARD. FORM 990, PART VI, SECTION B, LINE 12C THE AUDIT, BUDGET AND FINANCE COMMITTEE ANNUALLY REVIEWS THE DISCLOSURE PROCESS AND REPORTS TO THE BOARD OF DIRECTORS ON THE SUBMISSION OF ALL REQUIRED DISCLOSURE STATEMENTS. FORM 990, PART VI, SECTION B, LINE 15 THE BOARD OF DIRECTORS REGULARLY ASSESSES THE PERFORMANCE AND EFFECTIVENESS OF THE EXECUTIVE DIRECTOR AND DETERMINES FUTURE ACTIONS TO INCLUDE AMOUNT OF COMPENSATION BASED ON THAT ASSESSMENT. THE BOARD OF DIRECTORS PROVIDE GUIDANCE TO THE EXECUTIVE DIRECTOR IN DETERMINING THE COMPENSATION OF THE ORGANIZATION'S STAFF. THE MEMBERS OF THE BOARD OF DIRECTORS ARE NOT COMPENSATED. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC. THE FINANCIAL STATEMENTS AND FORM 990 ARE POSTED ON THE ORGANIZATION'S WEBSITE AND COPIES OF OTHER GOVERNING DOCUMENTS SUCH AS FORM 1023 AND CONFLICT OF INTEREST POLICY ARE AVAILABLE UPON WRITTEN REQUEST. FORM 990, PART XII, LINE 2C: AUDIT PROCESS - THERE WERE NO CHANGES IN THE OVERSIGHT PROCESS OR SELECTION PROCESS DURING THE YEAR. FORM 990, PART VI, PAGE 6, QUESTION 20 - BOOKS IN CARE OF THE ORGANIZATION EXTERNALLY CONTRACTS FOR BOOKKEEPING SERVICES.