2024-11-22T10:37:38-06:00 2023-12-31 591954606 CAVANAUGH & CO LLP 2381 FRUITVILLE ROAD SARASOTA FL 34237 990 2023-01-01 411306908 PRADER-WILLI SYNDROME ASSOCIATION (USA) PRAD 9413120400 1032 E BRANDON BLVD 4744 BRANDON FL 33511 STACY WARD CEO 9413120400 2024-11-20 1 0 MICHAEL R PENDER P00850742 9413662983 2024-11-20 2023 2024-10-15 13:58:12Z STACY WARD 1032 E BRANDON BLVD 4744 BRANDON FL 33511 1630271 0 X WWW.PWSAUSA.ORG X 1977 FL TO ENHANCE THE QUALITY OF LIFE AND EMPOWER THOSE AFFECTED BY PRADER-WILLI SYNDROME. 13 13 16 350 0 0 2117419 1353277 23978 181970 100611 71134 312 -29029 2242320 1577352 129812 55134 0 0 919010 877134 0 0 201164 506887 915156 1555709 1847424 686611 -270072 2880192 2753019 112201 54396 2767991 2698623 X TO ENHANCE THE QUALITY OF LIFE AND EMPOWER THOSE AFFECTED BY PRADER-WILLI SYNDROME. 0 0 306336 10674 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 2023, PWSA'S FAMILY SUPPORT TEAM RESPONDED TO 3,447 FAMILY SUPPORT INQUIRIES PROVIDING SUPPORT TO FAMILIES IN ALL 50 U.S. STATES AND MORE THAN 20 DIFFERENT COUNTRIES, TRAINED 10 SCHOOLS AND 9 PROVIDER AGENCIES, AND HOSTED A VIRTUAL SLEEP SUMMIT AND A HEALTH CARE ADVOCACY WEBINAR SERIES REACHING OVER 700 REGISTRANTS FOR EACH EVENT. 291224 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. IN 2023, PWSA CONDUCTED A DC FLY-IN FOR 51 ADVOCATES REPRESENTING 21 STATES WHO ATTENDED A COMBINED 76 CONGRESSIONAL MEETINGS AND HOSTED 11 ADVOCACY IN ACTION WEBINARS FOR OUR COMMUNITY. 49460 44460 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 2023, PWSA PAID OUT RESEARCH GRANTS TOTALING $44,460 AND RECEIVED THE FINDINGS FROM 3 OF OUR GRANT FUNDED PROJECTS. 446798 204867 NATIONAL CONVENTION AND MISCELLANEOUS 446798 204867 1093818 1 1 0 0 0 0 0 0 0 1 1 0 0 1 0 1 1 0 0 0 0 0 0 0 1 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 5 0 1 16 1 0 0 0 0 0 0 0 0 0 0 0 0 X 13 13 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 JEFFREY COVINGTON DIRECTOR 3.00 X 0 0 0 LISA LAMB DIRECTOR 3.00 X 0 0 0 STACY WARD INTERIM EXECUTIVE DIRECTOR 40.00 X X 81321 0 3297 CLINT HURDLE DIRECTOR 3.00 X 0 0 0 MITCHELL COHEN VICE CHAIR 3.00 X 0 0 0 JOHN LENS DIRECTOR 3.00 X 0 0 0 KATHRYN LUCERO DIRECTOR 3.00 X 0 0 0 TAMMIE PENTA DIRECTOR 3.00 X 0 0 0 MARGUERITE RUPNOW CHAIR 5.00 X X 0 0 0 TIM HEARN DIRECTOR 3.00 X 0 0 0 MATT MCCLEERY DIRECTOR 3.00 X 0 0 0 DENISE SERVAIS SECRETARY 3.00 X 0 0 0 MICHELLE TORBERT DIRECTOR 3.00 X 0 0 0 ANN SCHEIMANN DIRECTOR 3.00 X 0 0 0 PAIGE RIVARDRESIGNED 7-28-23 EXECUTIVE DIRECTOR 40.00 X 110878 0 3429 192199 0 6726 1 0 0 0 0 264038 1089239 10666 1353277 CONVENTION REVENUE 900009 159487 159487 RESIDENTIAL CARE TRAIN 900099 14539 14539 SCHOOL TRAINING 900099 4998 4998 EDUCATION MATERIAL 900099 2946 2946 181970 58198 58198 12736 200 0 0 12736 200 12936 12936 0 264038 51926 -51926 -51926 8350 993 7357 7357 MISCELLANEOUS REVENUE 900099 15540 15540 15540 1577352 204867 0 19208 44460 44460 10674 10674 198926 88158 51377 59391 558396 246538 221950 89908 5012 2220 2484 308 54860 24312 19728 10820 59940 26564 20476 12900 6903 6903 36035 1500 34535 14372 11453 2919 29536 4583 9718 15235 127452 99767 27685 10097 10097 104867 93279 10533 1055 42320 11100 31220 9262 9262 5126 5126 CATERING 309376 309376 SERVICE PROVIDERS 125577 120179 5398 SUPPLIES 98010 86808 2614 8588 SOFTWARE 67293 18826 48467 -71070 -105979 34869 40 1847424 1093818 552442 201164 365651 198045 37624 7108 2221 83291 88416 50386 36065 20460 14321 1599153 1231348 771792 1213781 2880192 2753019 69881 54396 42320 112201 54396 X 1169711 1088865 1598280 1609758 2767991 2698623 2880192 2753019 X -270072 118926 81778 X X 0 1 X 0 0 X 1108038 1205843 1456656 2117419 1353277 7241233 22484 7908 252783 24290 190320 497785 54873 19206 88359 53749 216187 1185395 1232957 1797798 2195458 1543597 7955205 8044 20351 98493 94724 39778 261390 53459 101516 140179 79208 274503 648865 61503 121867 238672 173932 314281 910255 7044950 61957 7917 26755 94156 58198 248983 61957 7917 26755 94156 58198 248983 15540 15540 1247352 1240874 1824553 2289614 1617335 8219728 0.85710 0.87780 0.03030 0.02760 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 224024 224024 336036 56820 56820 56006 56006 84009 4584 4584 511657 2192 80483 15625 578707 615607 2825 -92141 14634 511657 542049 3126 70432 615607 472337 1870 74506 6664 542049 382188 5455 90405 5711 472337 0.64000 0.36000 0 0 13719 8359 5360 36667 27706 8961 14321 BENEFICIAL INTEREST IN TRUST 767279 ENDOWMENTS 446502 1213781 X 1824072 118926 134697 253623 1570449 6903 6903 1577352 1893440 52919 52919 1840521 6903 6903 1847424 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, 2023. 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 - $81,778 FUNDRAISING EXPENSES - $51,926 COST OF SALES - $993 PART XI, LINE 4B - OTHER ADJUSTMENTS: INVESTMENT FEES - $6,903 PART XII, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES - $51,926 COST OF SALES - $993 PART XII, LINE 4B - OTHER ADJUSTMENTS: INVESTMENT FEES - $6,903 HOT STOVE EVENT 264038 264038 7000 26986 1500 16440 264038 264038 7000 26986 1500 16440 51926 -51926 1 UNIVERSITY OF FLORIDA BOARD OF TRUSTEES 33 TIGERT HALL PO BOX 113001 GAINSVILLE FL 32611 596002052 44460 0 NUTRITIONAL PHASES HOLIDAY CHEER-GIFT CARDS 57 10674 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. X X 0 0 0 0 0 0 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 81,778. FORM 990, PART XII, LINE 2C THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.