2025-06-10T14:16:48-07:00 2024-12-31 824189352 AWP ACCOUNTING 393 BROADLEAF ROCHESTER MI 48306 990 2024-01-01 411306908 PRADER-WIllI SYNDROME ASSOCIATION (USA) PRAD 9413120400 1032 E BRANDON BLVD BRANDON FL 33511 STACY WARD CHIEF EXECUTIVE OFFICER 9413120400 2025-06-09 true true Amy L Maust P01503740 5862466412 2025-06-10 2024 2025-03-06 01:10:19Z STACY WARD 1032 E BRANDON BLVD Brandon FL 33511 1612933 false X WWW.PWSAUSA.ORG X 1977 FL TO ENCHANCE THE QUALITY OF LIFE AND EMPOWER THOSE AFFECTED BY PRADER-WILLI SYNDROME 13 13 17 350 0 0 1353277 1446508 181970 77353 71134 61509 -29029 0 1577352 1585370 55134 12905 0 0 877134 887805 0 0 147693 915156 666415 1847424 1567125 -270072 18245 2753019 3678825 54396 778529 2698623 2900296 TO ENCHANCE THE QUALITY OF LIFE AND EMPOWER THOSE AFFECTED BY PRADER-WILLI SYNDROME false false 668057 12601 34585 FAMILY SUPPORT: PWSA/USAS FAMILY SUPPORT TEAM PROVIDES INDIVIDUALS DIAGNOSED WITH PRADER-WILLI SYNDROME, THEIR FAMILIERS, 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 2024, PWSAS FAMILY SUPPORT TEAM RESPONDED TO 4,043 FAMILY SUPPORT INQUIRES PROVIDING SUPPORT TO FAMILIES IN ALL 50 U.S. STATES AND 20 COUNTRIES. IN 2024, THERE WERE 24 TRAININGS TO HOSPITALS, SCHOOLS, LAW ENFORCEMENT AND RESIDENTIAL GROUP HOMES. WE HOSTED OUR FIRST EVER RESIDENTAL PROVIDERS CONFERENCE TO PROVIDE LECTURES/WORKSHOPS TO MORE THAN 100 PROFESSIONALS AROUND THE COUNTRY. THROUGH GENEROUS DONATIONS WE ASSEMBLED AND MAILED NEW DIAGNOSIS KITS AND CARE PAGES WITH PACKET OF HOPE RESOURCE GUIDE FOR NEW PWS FAMILIES. IN ADDITION, WE HAVE FREE FAMILY SUPPORT WEBINAR SERIES FOR FAMILIES AND PROVIDERS. 438454 0 3182 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 2024, PWSA CONDUCTED A DC FLY-IN DRAWING 147 ADVOCATES REPRESENTING 31 STATES. ADVOCATES ATTENDED A REMARKABLE 131 CONGRESSIONAL MEETINGS TO ENGAGE IN DISCUSSION AND BE A VOICE FOR THOSE AFFECTED BY PRADER-WILLI SYNDROME. 51214 10000 25960 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. PWSA USAS CLINICAL AND SCIENTIFIC ADVISORY BOARD (CSAB) DEDICATE THOUSANDS OF HOURS TO ENHANCE RESEARCH, WRITE EDUCATIONAL MATERIALS AND PROVIDE CONSULTATION TO UNDERSTANDING AND TREATING PWS. IN 2024, MULTIPLE PHASE 3 TRIALS BEGAN TO BRING NEW HOPE TO THE COMMUNITY. SEVERAL YEARS OF ADVOCACY AND RESEARCH EFFORTS HELPED PAVE WAY TO THE FIRST FDA APPROVED TREATMENT FOR HYPERPHAGIA. 1157725 true true false true false false false false false true true false false true false true true false false false false false false false true false false true true false false false false false false false false false false false false false false false false false false true 4 0 true 17 true false false false false true true true true false false false false false false false false false false false X 13 13 false false false false false false false true true false true true false true true true true true true false false FL X X STACY WARD CEO 9414876731 1032 E BRANDON BLVD 4744 BRANDON FL 33511 STACY WARD CHIEF EXECUTIVE OFFICER 50.00 X 102259 0 0 MARGUERITE RUPNOW CHAIR 5.00 X X 0 0 0 MITCH COHEN VICE CHAIR 3.00 X 0 0 0 DENISE SERVAIS SECRETARY 3.00 X 0 0 0 TINA THLENFELD TREASURER 3.00 X 0 0 0 TIM HEARN DIRECTOR 3.00 X 0 0 0 JOHN LENS DIRECTOR 3.00 X 0 0 0 MICHELLE TOLBERT DIRECTOR 3.00 X 0 0 0 MATT MCCLEERY DIRECTOR 3.00 X 0 0 0 KATHRYN LUCERO DIRECTOR 3.00 X 0 0 0 LISA LAMB DIRECTOR 3.00 X 0 0 0 JEFF COVINGTON DIRECTOR 3.00 X 0 0 0 ANN SCHEIMANN DIRECTOR 3.00 X 0 0 0 CLINT HURDLE DIRECTOR 3.00 X 0 0 0 102259 0 0 1 false false false 297414 1149094 1446508 CONFERENCE REVENUE 900009 13625 0 0 RESIDENTIAL CARE TRAINING 900099 28338 0 0 SCHOOL TRAINING 900099 6248 0 0 EDUCATION MATERIALS 900099 1573 0 0 DRUG TRIAL ASSISTANCE 900099 25960 0 0 1609 0 0 77353 58096 0 58096 30976 27563 3413 3413 0 0 3413 0 297414 0 0 0 0 1585370 77353 0 61509 0 0 12905 12905 0 0 0 0 102259 61356 20451 20452 678234 613589 41879 22766 6336 1726 4610 0 43550 20094 16080 7376 57426 22464 23815 11147 13400 0 13400 0 7752 0 7752 0 15915 97 16 15802 2824 2766 38 20 73107 58895 8480 5732 105855 102130 24 3701 41582 5915 35155 512 27849 849 27000 0 9275 7513 1140 622 4336 3482 553 301 SERVICE PROVIDERS 47463 23783 21220 2460 SUPPLIES 39218 11900 1143 26175 SOFTWARE 46395 30927 13754 1714 CATERING 110054 107933 0 2121 121390 69401 25197 26792 1567125 1157725 261707 147693 198045 303910 7108 628494 88416 163927 52161 45528 14321 6633 1231348 1283042 1213781 1292819 2753019 3678825 54396 86122 692407 54396 778529 X 1088865 1239195 1609758 1661101 2698623 2900296 2753019 3678825 X 18245 95132 14937 73359 X X false true false false X 0 0 1205843 1456656 2117419 1353277 1149094 7282289 7908 252783 24290 190320 77353 552654 19206 88359 53749 0 61509 222823 0 1232957 1797798 2195458 1543597 1287956 8057766 20351 98493 94724 39778 32577 285923 101516 140179 79208 274503 759494 1354900 121867 238672 173932 314281 792071 1640823 6416943 7917 26755 94156 58198 58096 245122 7917 26755 94156 58198 58096 245122 15540 15540 8318428 0.77140 0.85710 0.02950 0.03030 X Pt III Ln 12 Other Income Part III, Line 12 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2771 36662 39433 1501050 1540483 227024 56756 0 0 224024 228356 452380 678570 56820 39433 96253 56006 56756 112762 169143 4584 2771 7355 578707 1005 53757 633469 511657 2192 80483 15625 578707 615607 2825 -92141 14634 511657 542049 3126 70432 615607 472337 1870 74506 6664 542049 0.67000 0.33000 0.00000 false false 33692 27059 6633 18469 18469 0 6633 BENEFICIAL INTEREST IN TRUST 748177 ENDOWMENTS 544642 1292819 X 2020823 95132 274714 73359 443205 1577618 7752 7752 1585370 1819148 259775 259775 1559373 7752 7752 1567125 Pt 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, 2024. THE ASSOCIATIONS FEDERAL INCOME TAX RETURNS ARE SUBJECT TO EXAMINATION BY THE INTERNAL REVENUE SERVICE, GENERALLLY FOR THREE YEARS AFTER THE FEDERAL INCOME TAX RETURNS WERE FILED. Pt XI, Line 2d CHANGE IN VALUE OF TRUST $73,359 HOTSTOVE 236850 236850 0 GENERAL FUNDRAISERS 60564 60564 0 297414 297414 0 0 true 0 0 HOLIDAY CHEER-GIFT CARDS 25 7500 HURRICANE RELIEF 5 5000 Pt VI, Line 11b THE EXECUTIVE DIRECTOR AND TREASURER REVIEWED AND APPROVED THE IRS FORM 990. Pt VI, 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 Pt VI, Line 15a COMPENSATION PROCESS FOR THE 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 30 COMTEMPORANEOUS DOCUMENTATION AND RECORDKEEPING. Pt VI, Line 19 GOVERNING DOCUMENTS DISCLOSURE EXPLANATION - THE ASSOCIATION WHEN REQUESTED WILL PROVIDE ITS GOBERNING DOCUMENTS, CONFLIVT OF INTEREST POLICY, AND FINANCIAL STATEMENTS AVAILABLE TO THE REQUESTING PUBLIC. Pt XI CHANGE IN VALUE OF TRUST Pt XII, Line 2c THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.