2023-05-22T09:02:24-05:00 2022-12-31 410746749 CLIFTONLARSONALLEN LLP 475 REGENCY PARK SUITE 175 OFALLON IL 62269 990 2022-01-01 371112496 NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS NATI 6185662020 6 EXECUTIVE DRIVE SUITE 2 FAIRVIEW HEIGHTS IL 62208 KARL NELSEN PRESIDENT 6185662020 2023-05-18 1 KARL NELSEN 999009999 0 JEFF PARKER P00970069 6182331200 2023-05-18 3 AAL1 IAL1 2022 2023-04-26 12:10:37Z KARL NELSEN 6 EXECUTIVE DRIVE SUITE 2 FAIRVIEW HEIGHTS IL 62208 1514984 0 X WWW.NFED.ORG X 1981 IL EMPOWER AND CONNECT PEOPLE TOUCHED BY ECTODERMAL DYSPLASIAS VIA EDUCATION, SUPPORT, & RESEARCH. 11 11 8 375 0 0 1500948 1170684 4580 24687 429476 254390 33538 43450 1968542 1493211 14318 25103 0 0 532591 641016 0 0 167009 338445 417751 885354 1083870 1083188 409341 4339643 3999579 58766 190948 4280877 3808631 X TO EMPOWER AND CONNECT PEOPLE TOUCHED BY ECTODERMAL DYSPLASIAS THROUGH EDUCATION, SUPPORT, AND RESEARCH. 0 0 463508 16694 24687 SUPPORT - THE FAMILY SUPPORT TEAMS, COMPRISED OF FAMILY MEMBERS AND AFFECTED INDIVIDUALS, OVERSEES NFED'S SUPPORT PROGRAMS THAT SEEK TO EMPOWER AND CONNECT INDIVIDUALS AFFECTED BY ECTODERMAL DYSPLASIAS AND THEIR FAMILIES. 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 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. NFED PROVIDES FINANCIAL ASSISTANCE TO INDIVIDUALS TO ATTEND THE FAMILY CONFERENCE. 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. 251127 8409 0 TREATMENT - THE PATIENT CARE COUNCIL, COMPRISED OF MEDICAL AND DENTAL EXPERTS, OVERSEES THE NFED'S INITIATIVES TO IMPROVE TREATMENT OF ECTODERMAL DYSPLASIAS. NFED TEACHES CARE PROVIDERS HOW TO DIAGNOSE AND TREAT THE RARE DISORDERS THROUGH PROFESSIONAL SYMPOSIA AND GRAND ROUNDS AT UNIVERSITIES. 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. NFED ALSO HELPS FAMILIES PAY FOR NEEDED CARE THROUGH THE TREATMENT ASSISTANCE PROGRAM AND INSURANCE COACHING. 188054 0 0 RESEARCH - THE SCIENTIFIC ADVISORY COUNCIL OVERSEES NFED'S RESEARCH INITIATIVES, AIMED TO IMPROVE THE HEALTH AND QUALITY OF LIFE OF AFFECTED INDIVIDUALS BY FINDING SOLUTIONS AND, EVENTUALLY, FINDING CURES FOR ECTODERMAL DYSPLASIAS. NFED ADVANCES RESEARCH THROUGH ADVOCACY AND PARTNERSHIPS WITH ORGANIZATIONS SUCH AS THE NATIONAL INSTITUTES OF HEALTH. NFED PROVIDES SEED FUNDS TO RESEARCHERS, PROVIDES THEM WITH ACCESS TO AFFECTED INDIVIDUALS, AND SHARES INFORMATION TO LAUNCH LARGER PROJECTS. THE ECTODERMAL DYSPLASIAS INTERNATIONAL REGISTRY SERVES AS A REPOSITORY OF CLINICAL INFORMATION AND FACILITATES COMMUNICATION AMONG AFFECTED INDIVIDUALS, CLINICIANS INVOLVED IN THEIR TREATMENT AND SCIENTISTS WHO STRIVE TO ADVANCE RESEARCH ON ECTODERMAL DYSPLASIAS. NFED ALSO SPONSORS RESEARCH CONFERENCES. 902689 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 GEORGE BARBAR 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 TIMOTHY MICKELSON DIRECTOR OF DEVELOPMENT 40.00 X 113461 0 0 MARY FETE EXECUTIVE DIRECTOR 40.00 X 118124 0 0 231585 0 0 2 0 0 0 0 293896 876788 114300 1170684 NATIONAL FAMILY CONFER 624100 24687 24687 24687 36066 36066 218324 0 218324 218324 218324 61437 293896 21773 39664 39664 PROMOTIONAL ITEMS 624100 3786 3786 3786 1493211 24687 0 297840 25103 25103 583754 472444 6815 104495 11831 9575 138 2118 967 783 11 173 44464 35986 519 7959 1024 840 10 174 48416 39701 484 8231 2584 2119 26 439 41698 34193 417 7088 47861 40681 957 6223 12063 9892 121 2050 10985 9008 110 1867 23665 17275 1657 4733 6104 5006 61 1037 FAMILY CONFERENCES 86888 86888 ADVOCACY 42425 42425 MEMBERSHIPS 41046 33657 410 6979 DEVELOPMENT 23307 9324 2331 11652 29685 27789 105 1791 1083870 902689 14172 167009 609178 772544 125505 1 25963 21575 45724 0 8123 23467 41323 41323 0 0 3525150 3060702 121290 4339643 3999579 49589 63558 9177 6100 0 121290 58766 190948 X 4223557 3655423 57320 153208 4280877 3808631 4339643 3999579 409341 -877198 -4389 0 X X 0 1 X 1 0 X 685752 823099 793549 1500948 1170684 4974032 685752 823099 793549 1500948 1170684 4974032 55633 4918399 26206 26429 24326 25780 36066 138807 783 3652 207 803 3786 9231 5122070 259414 0.96020 0.93670 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS - 2018 AMOUNT: $ 783. 2019 AMOUNT: $ 3,652. 2020 AMOUNT: $ 207. 2021 AMOUNT: $ 803. 2022 AMOUNT: $ 3,786. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 41323 41323 0 0 LEASE LIABILITY 121290 121290 X 673323 -877198 35537 21773 -819888 1493211 0 1493211 1145569 39926 21773 61699 1083870 0 1083870 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 21,773. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSE NETTED WITH REVENUE ON FORM 990 21,773. HALLOWEEN BASH 105216 94026 11190 5413 5 250117 199870 50247 16360 355333 293896 61437 21773 21773 39664 1 TREATMENT FUNDING 2 8409 FAMILY CONFERENCE SCHOLARSHIPS 16 16694 PART I, LINE 2: FOR CLIENT ASSISTANCE, FUNDS ARE SENT DIRECTLY TO CARE PROVIDERS. X 3 114300 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.