2026-06-24T08:30:11-05:00 2025-12-31 591954606 CAVANAUGH & CO LLP 2381 FRUITVILLE ROAD SARASOTA FL 34237 990 2025-01-01 411306908 PRADER-WILLI SYNDROME ASSOCIATION (USA) PRAD 9413120400 1032 E BRANDON BLVD 4744 4744 BRANDON FL 33511 STACY WARD CEO 9413120400 2026-06-22 1 MICHAEL R PENDER P00850742 9413662983 2026-06-22 2025 2025-03-06 01:10:19Z STACY WARD 1032 E BRANDON BLVD 4744 4744 BRANDON FL 33511 3287101 0 X WWW.PWSAUSA.ORG X 1977 FL TO ENHANCE THE QUALITY OF LIFE AND EMPOWER THOSE AFFECTED BY PRADER-WILLI SYNDROME. 15 15 16 0 0 0 1446508 2666053 77353 471288 61509 71330 0 -194516 1585370 3014155 12905 50000 0 0 887805 1076507 0 0 257731 666415 1555263 1567125 2681770 18245 332385 3678825 3636718 778529 148208 2900296 3488510 X TO ENHANCE THE QUALITY OF LIFE AND EMPOWER THOSE AFFECTED BY PRADER-WILLI SYNDROME. 0 0 858901 749554 FAMILY SUPPORT: PWSA/USA'S FAMILY SUPPORT TEAM PROVIDES INDIVIDUALS DIAGNOSED WITH PRADER-WILLI SYNDROME, THEIR FAMILIES, AND CARE PROVIDERS WITH CRITICAL INFORMATION AND RESOURCES ON PWS. WE ALSO PROVIDE EDUCATION TO MEDICAL PROVIDERS, SCHOOLS, AND PROFESSIONAL CARE GIVERS THROUGH ONGOING TRAINING, TOOLKITS AND OTHER VALUABLE RESOURCES. WE SUPPORT THE FAMILY FROM NICU THROUGH ALL STAGES OF THE PWS JOURNEY. IN 2025, PWSA'S FAMILY SUPPORT TEAM RESPONDED TO 4,567 FAMILY SUPPORT INQUIRIES PROVIDING SUPPORT TO FAMILIES IN ALL 50 U.S. STATES AND MORE THAN 20 DIFFERENT COUNTRIES. 363560 298208 ADVOCACY AND AWARENESS: INCREASING AWARENESS AND EFFECTIVELY ADVOCATING FOR PRADER-WILLI SYNDROME AT THE STATE AND FEDERAL LEVEL IS A CRITICAL COMPONENT OF OUR MISSION. WE SEEK TO INVOLVE ALL MEMBERS OF OUR COMMUNITY AND WORK TO KEEP YOU INFORMED ON THE BEST WAYS TO AFFECT CHANGE FOR OUR LOVED ONES. 138166 50000 23200 RESEARCH: PWSA/USA SEEKS TO SUPPORT RESEARCH PROJECTS WITH THE POTENTIAL FOR IMMEDIATE AND HIGH IMPACT FOR THE PWS COMMUNITY. THE GOAL IS TO FAST-TRACK BETTER TREATMENT FOR THE SYNDROME, AND WE PROUDLY COLLABORATE WITH PARTNERS REPRESENTING PHARMACEUTICAL COMPANIES, RESEARCH UNIVERSITIES, AND MORE TO ACHIEVE THAT GOAL. IN 2025, PWSA PAID OUT RESEARCH AND HEALTHCARE DEVELOPMENTS GRANTS TOTALING $50,000 AND RECEIVED THE FINDINGS FROM 2 OF OUR GRANT FUNDED PROJECTS. 859925 1047634 NATIONAL CONVENTION AND MISCELLANEOUS 859925 1047634 2220552 1 1 0 1 0 0 0 0 0 1 1 0 0 0 0 0 1 0 0 0 0 0 0 0 1 0 0 1 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 4 0 1 16 0 0 0 0 0 1 1 1 1 0 0 0 0 0 0 0 0 0 X 15 15 0 0 0 0 0 0 0 1 1 0 1 1 0 1 1 1 1 1 1 0 0 FL X X STACY WARD CEO 9414876731 1032 E BRANDON BLVD 4744 BRANDON FL 33511 MARGUERITE RUPNOW CHAIRMAN OF THE BOARD 3.00 X X 0 0 0 TINA IHENFELD TREASURER 5.00 X X 0 0 0 DENISE SERVAIS SECRETARY 3.00 X X 0 0 0 JEFFREY COVINGTON DIRECTOR 3.00 X 0 0 0 KATHRYN LUCERO DIRECTOR 3.00 X 0 0 0 ANN SCHEIMANN DIRECTOR 3.00 X 0 0 0 TIM HEARN DIRECTOR 3.00 X 0 0 0 CLINT HURDLE DIRECTOR 3.00 X 0 0 0 JOHN LENS DIRECTOR 3.00 X 0 0 0 MICHELLE TORBERT DIRECTOR 3.00 X 0 0 0 LISA LAMB DIRECTOR 3.00 X 0 0 0 MITCH COHEN DIRECTOR 3.00 X 0 0 0 MATT MCCLEERY DIRECTOR 3.00 X 0 0 0 STACY WARD CEO 40.00 X 134856 0 0 134856 0 0 1 0 0 0 0 735858 1930195 2666053 CONVENTION REVENUE 900009 471288 471288 471288 71330 71330 0 735858 272946 -272946 -272946 MISCELLANEOUS REVENUE 900099 78430 78430 78430 3014155 549718 0 -201616 50000 50000 835004 693054 75150 66800 8977 7451 808 718 157172 126691 19314 11167 75354 62544 6782 6028 168780 146388 16788 5604 49150 47800 1350 108879 19355 715 88809 235288 207952 6964 20372 11916 10832 592 492 112087 94988 1982 15117 25933 25933 3418 2837 308 273 3070 2585 265 220 CATERING 252975 220369 32606 VENUE AND GRATUITY 225533 225533 OTHER-PROFIT SPLIT 220559 220520 25 14 BANK FEES 45753 18116 27637 91922 63537 20224 8161 2681770 2220552 203487 257731 303910 684922 628494 11802 163927 178480 40391 31844 6633 8547 1283042 2017901 1292819 735066 3678825 3636718 86122 148208 692407 778529 148208 X 1239195 2159672 1661101 1328838 2900296 3488510 3678825 3636718 X 332385 134048 46575 -12541 1138 86609 X X 0 0 0 X 1456656 2117419 1353277 1149094 2666053 8742499 252783 24290 190320 77353 471288 1016034 88359 53749 142108 1797798 2195458 1543597 1226447 3137341 9900641 98493 94724 39778 27576 20008 280579 140179 79208 270676 873403 1363466 238672 173932 310454 27576 893411 1644045 8256596 26755 94156 58198 61509 71330 311948 26755 94156 58198 61509 71330 311948 15540 78430 93970 1824553 2289614 1617335 1287956 3287101 10306559 0.80110 0.86530 0.03030 0.03010 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 224024 228356 17340 469720 704580 56820 39433 17340 113593 56006 56756 17340 130102 195153 4584 2771 7355 639088 1030 96503 5030 731591 578707 1005 53757 5619 633469 511657 2192 80483 15625 578707 615607 2825 -92141 14634 511657 542049 3126 70432 615607 0 0 40391 31844 8547 8547 BENEFICIAL INTEREST IN TRUST 735066 735066 X 3350568 134048 197775 17131 348954 3001614 12541 12541 3014155 2762765 151200 -69478 81722 2681043 727 727 2681770 PART X, LINE 2: MANAGEMENT HAS EVALUATED THE EFFECT OF AN ACCOUNTING STANDARD RELATING TO ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES. MANAGEMENT HAS DETERMINED THAT THE ASSOCIATION HAD NO UNCERTAIN INCOME TAX POSITIONS THAT COULD HAVE A SIGNIFICANT EFFECT ON THE FINANCIAL STATEMENTS FOR THE YEAR ENDED DECEMBER 31, 2025. THE ASSOCIATION'S FEDERAL INCOME TAX RETURNS ARE SUBJECT TO EXAMINATION BY THE INTERNAL REVENUE SERVICE, GENERALLY FOR THREE YEARS AFTER THE FEDERAL INCOME TAX RETURNS WERE FILED. PART XI, LINE 2D - OTHER ADJUSTMENTS: CHANGE IN VALUE OF TRUST FUNRAISING DONATED AUCTION ITEMS INCOME PART XI, LINE 4B - OTHER ADJUSTMENTS: INVESTMENT FEES PART XII, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING DONATED AUCTION ITEMS PART XII, LINE 4B - OTHER ADJUSTMENTS: PRIOR PERIOD ADJUSTMENT-DEPRECIATION X X X 0 ALL VOLUNTEERS 1032 E BRANDON BLVD 4744 BRANDON FL 33511 0 0 0 0 GALA 201033 201033 6117 1502 13490 17349 ZARAH'S NIGHT OF LIGHTS 127089 127089 6108 6704 2713 3963 1 407736 407736 10000 5000 200000 0 735858 735858 22225 13206 216203 21312 272946 -272946 1 THE CHICAGO SCHOOL PO BOX 713500 CHICAGO IL 60677 363005527 45000 0 EDUCATION AN DHOME BASED SUPPORT SCHOLARSHIPS TO CONVENTION 31 26800 REGISTRATION FEES AND HOTEL STIPEND HOLIDAY CHEER GIFT CARDS 46 10208 GIFT CARDS PART I, LINE 2: THE ORGANIZATION REQUIRES EACH GRANTEE TO PRESENT A PROGRESS REPORT TO THE BOARD OF DIRECTORS AT MID-POINT THROUGH THEIR RESEARCH AND ALSO REQUIRE A FINAL PRESENTATION OF THEIR RESERCH RESULTS AT THE CONCLUSION OF THE PROJECT BEFORE FINAL PAYOUT. PART II, ITEM 1 THE ORGANIZATION REQUIRES PROGRESS REPORTS AND FINAL PRESENTATION AT THE CONCLUSION OF THE GRANT PERIOD PART III, ITEM 1 APPLICANTS APPLY AND A COMMITTEE LOOKS AT VARIOUS NEED AND PRIOR ATTENDANCE CRITERIA TO SELECT RECEIPIENTS. X X 0 0 0 0 0 0 0 0 0 X FUNDRAISING AUCTION ZARAH'S NIGHT OF LIGHTS 0 27352 FMV X FUNDRAISING AUCTION PRADER SILLY 0 24056 FMV X FUNDRAISING AUCTION GALA 0 18068 FMV 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B THE EXECUTIVE COMMITTEE AND TREASURER REVIEWED AND APPROVED THE IRS FORM 990. FORM 990, PART VI, SECTION B, LINE 12C ENFORCEMENT OF CONFLICTS OF INTEREST POLICY - OFFICERS, DIRECTORS, AND KEY EMPLOYEES SIGN A CONFLICT OF INTEREST FORM EACH YEAR AT THE FALL BOARD MEETING. FORM 990, PART VI, SECTION B, LINE 15A COMPENSATION PROCESS FOR TOP OFFICIALS - THE POLICY FOR DETERMINING COMPENSATION OF THE PWSA EXECUTIVE DIRECTOR INCLUDES THE ELEMENTS OF 1) REVIEW AND APPROVAL BY THE EXECUTIVE COMMITTEE OF BOARD OF DIRECTORS, 2) USE OF DATA OF COMPARABLE COMPENSATION, AND 3) COMTEMPORANEOUS DOCUMENTATION AND RECORDKEEPING. FORM 990, PART VI, SECTION C, LINE 19 GOVERNING DOCUMENTS DISCLOSURE EXPLANATION - THE ASSOCIATION WHEN REQUESTED WILL PROVIDE ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS AVAILABLE TO THE REQUESTING PUBLIC. FORM 990, PART XI, LINE 9: CHANGE IN VALUE OF TRUST 86,609. FORM 990, PART XII, LINE 2C THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.