2024-10-04T14:31:57-05:00 2023-12-31 390974031 WEGNER CPAS LLP 2921 LANDMARK PL STE 300 MADISON WI 537134236 990 2023-01-01 351844264 NATIONAL NIEMANN-PICK DISEASE FOUNDATION INC NATI 8772873672 PO BOX 49 FORT ATKINSON WI 535380049 ELIZABETH HEINZE CHAIR 8772873672 2024-10-01 1 0 JASON STEPHENS CPA P01263225 6082744020 2024-10-01 2023 2024-10-15 13:58:12Z JOSLYN CROWE PO BOX 49 FORT ATKINSON WI 535380049 591177 0 X WWW.NNPDF.ORG X 1992 WI TO SUPPORT AND EMPOWER PATIENTS AND FAMILIES AFFECTED BY NIEMANN-PICK DISEASE THROUGH EDUCATION, COLLABORATION, AND RESEARCH. 13 13 3 30 0 0 526689 552816 24017 26030 1551 4934 4414 7397 556671 591177 107831 108422 0 0 245343 252076 0 0 67125 372678 436174 725852 796672 -169181 -205495 698723 581378 73716 81866 625007 499512 THE NATIONAL NIEMANN-PICK DISEASE FOUNDATION, INC. (NNPDF) IS A NON-PROFIT, PATIENT ADVOCACY AND FAMILY SUPPORT ORGANIZATION DEDICATED TO SUPPORTING AND EMPOWERING PATIENTS AND FAMILIES AFFECTED BY NIEMANN-PICK DISEASE, THROUGH EDUCATION, COLLABORATION AND RESEARCH. 0 0 485766 46094 26030 FAMILY SUPPORT - SUPPORT SERVICES TO FAMILIES WHO HAVE A FAMILY MEMBER DIAGNOSED WITH NIEMANN-PICK DISEASE AND PATIENT ADVOCACY EFFORTS. PATIENT ADVOCACY FOR ACCESS TO MEDICATIONS AND EXPERIMENTAL THERAPIES. EMOTIONAL SUPPORT TO INDIVIDUALS AND FAMILIES DEALING WITH ALL TYPES OF NIEMANN-PICK DISEASE, ASSISTANCE THROUGH CRISES, INFORMATION AND IDEAS ABOUT ISSUES SUCH AS DOCTORS, CLINICS, INSURANCE COMPANIES AND OTHER HEALTH AND HUMAN SERVICE PROGRAMS AND PRACTICAL SUGGESTIONS ABOUT DAY-TO-DAY CARE. COMMUNICATIONS INCLUDING MONTHLY NEWSLETTERS, E-NEWS, AND SOCIAL MEDIA NEWS UPDATES. THE ANNUAL NNPDF FAMILY SUPPORT AND MEDICAL CONFERENCE BRINGS TOGETHER FAMILIES, SCIENTISTS, AND MEDICAL PROFESSIONALS TO SHARE INFORMATION AND PROVIDE SUPPORT. 96694 62328 RESEARCH SUPPORT - NNPDF SUPPORTS OVER 450 DIAGNOSED FAMILIES AT ALL STAGES OF THEIR NIEMANN-PICK DISEASE JOURNEY. WE PROVIDE ACCURATE UP-TO-DATE INFORMATION ON THE LATEST ADVANCES IN MEDICINE AND SCIENCE RELATED TO NIEMANN-PICK DISEASE. PROVISION AND MONITORING OF SCIENTIFIC RESEARCH GRANTS AND FELLOWSHIPS TO RESEARCH SCIENTISTS. 582460 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 1 1 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 6 0 3 1 0 0 0 0 0 0 0 0 0 0 0 0 X 13 13 0 0 1 0 0 0 0 1 0 0 0 1 1 1 1 1 1 1 0 0 WI MD X X JOSLYN CROWE 8772873672 PO BOX 49 FORT ATKINSON WI 535380049 BECKY MCGUIRE CHAIR 2.00 X X 0 0 0 ELIZABETH HEINZE VICE CHAIR 1.00 X X 0 0 0 MEGHANN FERGUSON DIRECTOR 1.00 X 0 0 0 MIKE SMITH TREASURER 1.00 X X 0 0 0 MARY FRANCES HARMON DIRECTOR 1.00 X 0 0 0 CHRYSTELLE BOUGAULT DIRECTOR 1.00 X 0 0 0 GAIL KOUJAIAN DIRECTOR 1.00 X 0 0 0 CARA GILMORE DIRECTOR 1.00 X 0 0 0 KARI LATO DIRECTOR 1.00 X 0 0 0 ANTHONY LEONI DIRECTOR 1.00 X 0 0 0 PAUL MERRIGAN DIRECTOR 1.00 X 0 0 0 TRAVIS OBERMEYER DIRECTOR 1.00 X 0 0 0 TAYLOR SABKY SECRETARY 1.00 X X 0 0 0 JOSLYN CROWE EXECUTIVE DIRECTOR 40.00 X 130060 0 5009 130060 0 5009 1 0 0 0 0 882 551934 552816 CONFERENCE REGISTRATIO 561920 26030 26030 26030 4934 4934 7397 7397 7397 591177 26030 0 12331 X 22803 22803 46094 46094 39525 39525 135068 87344 32587 15137 91664 69519 11929 10216 8359 5783 1641 935 16985 11751 3335 1899 27889 27889 118533 55653 47943 14937 24657 4727 7081 12849 15653 6964 1985 6704 840 581 165 94 30576 27257 2421 898 189447 189371 76 2804 2804 6312 4363 1244 705 MEMBERSHIP DUES 10850 10000 850 8613 725 5213 2675 796672 582460 147087 67125 464250 468386 166068 72229 50441 12563 12823 8666 17848 15511 5141 2337 0 17197 698723 581378 67280 78047 6436 3819 73716 81866 X 480835 317015 144172 182497 625007 499512 698723 581378 X -205495 80000 0 X 0 1 X 1 0 X 686056 663734 490047 526689 552816 2919342 686056 663734 490047 526689 552816 2919342 1401173 1518169 3704 1511 328 1551 4934 12028 25734 25734 2957104 131233 0.51340 0.59250 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS REVENUE - 2019 AMOUNT: $ 25,734. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 9435 9435 0 8413 6076 2337 2337 594077 2900 2900 591177 0 591177 799572 2900 2900 796672 0 796672 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS LOCATED IN THE REGION 39525 0 0 0 0 0 0 39525 0 39525 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH FUNDING 39525 WIRE TRANSFER 0 1 0 0 0 0 0 0 PART I, LINE 2: NNPDF GRANTEES ARE REQUIRED TO PROVIDE INTERIM REPORTING ON THEIR RESEARCH, PURSUANT TO THEIR GRANT AGREEMENTS. NNPDF REVIEWS REPORTING WITH THE ASSISTANCE OF PROFESSIONAL CONSULTANTS. THE GRANTS ARE ACCOUNTED FOR USING U.S. GAAP. 1 UNIVERSITY OF MARYLAND COLLEGE PARK 7950 BALTIMORE AVENUE COLLEGE PARK MD 20742 526002033 STATE OF MARYLAND 22803 0 NPC RESEARCH FELLOWSHIP 1 0 FAMILY ADVISORY WORKING GROUP STIPEND 41 14350 EMERGENCY HARDSHIP PROGRAM 20 19526 HOLIDAY GIFT PROGRAM 112 11315 PURCHASE COST OF THE GIFT. TOYS PURCHASED FOR KIDS IMPACTED BY NPD THAT ARE GIVEN OUT DURING THE HOLIDAYS SCHOLARSHIP 1 403 RARE DISEASE WEEK STIPEND 1 500 PART I, LINE 2: NNPDF GRANTEES ARE REQUIRED TO PROVIDE INTERIM REPORTING ON THEIR RESEARCH, PURSUANT TO THEIR GRANT AGREEMENTS. NNPDF REVIEWS REPORTING WITH THE ASSISTANCE OF PROFESSIONAL CONSULTANTS. FORM 990, PART VI, SECTION A, LINE 4 THE BOARD APPROVED THE FOLLOWING CHANGES TO NNPDF'S BYLAWS DURING THE OCTOBER 2023 MEETING: - AN ANNUAL MEETING WILL NOT BE REQUIRED. - OFFICER TERMS ARE STRUCTURED TO ALLOW SOMEONE TO REMAIN ON THE BOARD AND FINISH THEIR OFFICER TERM. - VOTES WILL BE ALLOWED TO BE TAKEN DURING THE MEETING, RATHER THAN ELECTRONICALLY AFTER THE MEETING. - THE SCIENTIFIC ADVISORY BOARD IS WRITTEN INTO THE BYLAWS WITH THE BOARD HAVING APPROVAL OVER ITS MEMBERS AND REQUIRING ITS MEMBERS TO ABIDE BY NNPDF'S CONFLICT-OF-INTEREST AND TRAVEL-EXPENSE POLICIES. FORM 990, PART VI, SECTION A, LINE 8B THE ORGANIZATION DOES NOT HAVE ANY COMMITTEES WITH AUTHORITY TO ACT ON BEHALF OF THE GOVERNING BODY. FORM 990, PART VI, SECTION B, LINE 11B THE PREPARED FORM 990 IS REVIEWED AND APPROVED BY THE MEMBERS OF THE GOVERNING BODY BEFORE THE RETURN IS FILED WITH THE IRS. FORM 990, PART VI, SECTION B, LINE 12C ANNUALLY ALL DIRECTORS AND OFFICERS COMPLETE AND SIGN A STATEMENT THAT PROVIDES INFORMATION REGARDING THEIR INTERESTS AND THOSE OF THEIR FAMILY MEMBERS THAT COULD GIVE RISE TO CONFLICTS. THE MEMBERS OF THE GOVERNING BODY MAKE DETERMINATIONS OF WHETHER A CONFLICT EXISTS AND REVIEW ACTUAL CONFLICTS. ANY PERSON WITH A CONFLICT IS PROHIBITED FROM PARTICIPATING IN THE GOVERNING BODY'S DELIBERATIONS AND DECISIONS IN THE TRANSACTION. FORM 990, PART VI, SECTION B, LINE 15A THE INDEPENDENT MEMBERS OF THE GOVERNING BODY ANNUALLY CONDUCT A PERFORMANCE REVIEW OF THE EXECUTIVE DIRECTOR AND DETERMINE THE EXECUTIVE DIRECTOR'S COMPENSATION USING DATA ON COMPENSATION PAID BY COMPARABLE ORGANIZATIONS FOR SIMILAR SERVICES. THE MEMBERS OF THE GOVERNING BODY APPROVE THE EXECUTIVE DIRECTOR'S COMPENSATION WITH AN OFFICIAL VOTE AND DISCUSSIONS AND RESULTS ARE DOCUMENTED IN THE MINUTES OF THE MEETINGS OF THE GOVERNING BODY. 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 UPON REQUEST. FORM 990, PART IX, LINE 11G CONSULTING: PROGRAM SERVICE EXPENSES 55,653. MANAGEMENT AND GENERAL EXPENSES 39,263. FUNDRAISING EXPENSES 14,937. TOTAL EXPENSES 109,853. CONTRACTED SUPPORT STAFF: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 8,680. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 8,680. PART XI, LINE 8 DURING THE AUDIT FOR THE YEAR ENDED DECEMBER 31, 2023, A CHANGE WAS NEEDED IN THE ACCOUNTING FOR FELLOWSHIP GRANTS IN THAT THEY WERE PREVIOUSLY TREATED AS UNCONDITIONAL GRANTS INSTEAD OF CONDITIONAL. THIS RESULTED IN A CHANGE OF AMOUNTS PREVIOUSLY REPORTED AS OF DECEMBER 31, 2022. THE PRIOR PERIOD ADJUSTMENT IS ATTRIBUTABLE TO FELLOWSHIP PREPAID EXPENSES.