2024-11-07T13:41:59-06:00 2023-12-31 954046751 KATZ CASSIDY AN ACCOUNTANCY CORPORATION 11400 W OLYMPIC BLVD SUITE 1050 LOS ANGELES CA 90064 990 2023-01-01 311763110 FOUNDATION FOR PRADER-WILLI RESEARCH INC FOUN 8883225487 440 N BARRANCA AVE 3620 COVINA CA 91723 SUSAN HEDSTROM EXECUTIVE DIRECTOR 8883225487 2024-11-06 1 0 NEAL KATZ P01053915 3104776300 2024-11-06 2023 2024-10-15 13:58:12Z SUSAN HEDSTROM 440 N BARRANCA AVE 3620 COVINA CA 91723 7604143 0 X WWW.FPWR.ORG X 2001 NY SUPPORTS RESEARCH TO ADVANCE THE UNDERSTANDING AND TREATMENT OF PRADER-WILLI SYNDROME. 11 11 16 50 0 0 4654934 5653599 231217 229189 83302 294425 114484 358367 5083937 6535580 3615813 3877623 0 0 791170 1127088 0 0 758599 681514 1347431 5088497 6352142 -4560 183438 8344580 9519457 3233878 4227228 5110702 5292229 TO ELIMINATE THE CHALLENGES OF PRADER WILLI SYNDROME THROUGH THE ADVANCEMENT OF RESEARCH AND THERAPEUTIC DEVELOPMENT. 0 0 5248284 3877623 237596 THROUGH THE IMPLEMENTATION OF TRANSLATIONAL RESEARCH PROGRAMS, THE MANAGEMENT OF A WORLD-CLASS GRANTS PROGRAM, AND THE DEVELOPMENT OF PRADER WILLI SYNDROME (PWS) RESEARCH TOOLS, THE FOUNDATION FOR PRADER-WILLI RESEARCH (FPWR) ADVANCES RESEARCH IN ORDER TO DEVELOP NEW TREATMENTS FOR PWS AND IMPROVE THE HEALTH AND WELL-BEING OF THOSE WITH PWS. UNDER THE GUIDANCE OF OUR SCIENTIFIC ADVISORY BOARD THROUGH A CAREFULLY MANAGED GRANTS PROCESS, FPWR SELECTS RESEARCH PROJECTS BASED ON THE COLLABORATIVE INPUT OF RESEARCHERS AND PARENTS, CHOOSING PROJECTS THAT ARE BOTH SCIENTIFICALLY MERITORIOUS AND HIGHLY RELEVANT FOR INDIVIDUALS WITH PWS AND THEIR FAMILIES. 5248284 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 X 0 0 16 1 0 0 0 0 0 1 1 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 0 0 AL AR CA FL GA HI IL KS KY MA MD MI MN MS NH NJ NY NC ND OK OR PA SC TN UT VA WV WI X X SPRCHRGR 3106256262 8605 SANTA MONICA BLVD WEST HOLLYWOOD CA 90069 PAUL WISSMAN CHAIRPERSON 1.00 X X 0 0 0 DREW HARMAN VICE CHAIRPERSON 0.50 X X 0 0 0 AMBER ROBERSON SECRETARY 0.50 X X 0 0 0 IAN ALBERG DIRECTOR 0.50 X 0 0 0 SCOTT ARANT DIRECTOR 0.50 X 0 0 0 BRIAN CARUCCI TREASURER 0.50 X 0 0 0 JUSTIN NELSON DIRECTOR 0.50 X 0 0 0 MIKE SIMS DIRECTOR 0.50 X 0 0 0 RENAY SNYDER DIRECTOR 0.50 X 0 0 0 KRISTIN WHITE DIRECTOR 0.50 X 0 0 0 SUSAN HEDSTROM EXECUTIVE DIRECTOR 35.00 X 129671 0 0 THERESA STRONG DIRECTOR OF RESEARCH PROGR 40.00 X 168974 0 0 298645 0 0 5 0 1 0 0 1170877 4482722 5653599 CONFERENCE REVENUE 900099 229189 229189 229189 219505 219505 1088943 1014023 74920 74920 74920 404500 1170877 54540 349960 349960 OTHER INCOME 900099 8407 8407 8407 6535580 237596 0 644385 2232902 2232902 1644721 1644721 129671 69985 8637 51049 905358 488630 60305 356423 8418 3615 1030 3773 83641 44471 6265 32905 121113 121113 122934 58243 4788 59903 1967 1378 589 230746 109125 121621 73673 50990 8112 14571 202 202 16840 7674 9166 RESEARCH 364189 364189 DUES & SUBSCRIPTIONS 87535 35917 46951 4667 CATERING 80345 80345 0 0 WEBSITE 54484 10568 41220 2696 193403 45531 37470 110402 6352142 5248284 345259 758599 4639 32336 7975970 8885256 39962 164138 56069 55784 11012 7080 0 3932 17940 28011 250000 350000 8344580 9519457 58654 694953 3175224 3532275 3233878 4227228 X 3449567 5292229 1661135 0 5110702 5292229 8344580 9519457 X 183438 -1911 X X 0 1 X 1 0 X 3863432 3495770 3612120 4654934 5653599 21279855 3863432 3495770 3612120 4654934 5653599 21279855 5788814 15491041 54246 26556 1677 83302 219505 385286 114368 349960 464328 116 8407 8523 22137992 1205884 0.69970 0.74530 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2022 AMOUNT: $ 116. 2023 AMOUNT: $ 8,407. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 11012 7080 3932 3932 X 6477071 -24682 -33827 -58509 6535580 0 6535580 6295544 -56508 -56508 6352052 90 90 6352142 PART X, LINE 2: THE FOUNDATION RECOGNIZES THE EFFECT OF INCOME TAX POSITIONS ONLY IF THOSE POSITIONS ARE MORE LIKELY THAN NOT TO BE SUSTAINED. MANAGEMENT HAS DETERMINED THAT THE FOUNDATION HAD NO UNCERTAIN POSITIONS THAT WOULD REQUIRE FINANCIAL STATEMENT RECOGNITION OR DISCLOSURE. THE FOUNDATION IS NO LONGER SUBJECT TO EXAMINATIONS BY THE APPLICABLE TAXING JURISDICTIONS FOR PERIODS PRIOR TO 2020. PART XI, LINE 2D - OTHER ADJUSTMENTS: DIRECT BENEFITS TO DONORS -79,867. DIRECT FUNDRAISING EXPENSES 54,540. BAD DEBT RECOVERIES -8,500. PART XII, LINE 2D - OTHER ADJUSTMENTS: DIRECT BENEFITS TO DONORS -79,867. RETURN OF PRIOR YEAR GRANTS -22,681. DIRECT FUNDRAISING EXPENSES 54,540. BAD DEBT RECOVERIES -8,500. PART XII, LINE 4B - OTHER ADJUSTMENTS: DEPRECIATION EXPENSE 90. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS TO RECIPIENTS IN REGION FOR RESEARCH 1425846 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS IN REGION FOR RESEARCH 161999 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS IN REGION FOR RESEARCH 56876 0 0 0 0 0 0 1644721 0 1644721 EAST ASIA AND THE PACIFIC RESEARCH 161999 WIRE TRANSFER 0 NORTH AMERICA RESEARCH 56876 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH 67500 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH 532980 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 76820 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH 145800 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 2000 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 140110 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 75600 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 3900 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 381136 WIRE TRANSFER 0 11 0 0 0 0 0 0 0 PART I, LINE 2: THE ORGANIZATION (FPWR) HAS A PROFESSIONALY MANAGED GRANT PROCESS THAT ELECTS PROJECTS BASED ON THE COLLABORATIVE INPUT OF BOTH SCIENTISTS AND PARENTS. FPWR CHOOSES PROJECTS THAT ARE BOTH SCIENTIFICALLY SOUND AND HIGHLY RELEVANT FOR INDIVIDUALS WITH PRADER-WILLI SYNDROME (PWS) AND THEIR FAMILIES. FPWR'S GRANT PROCESS IS MANAGED BY A SCIENTIFIC ADVISORY BOARD THAT HAS ESTABLISHED THE FOLLOWING OBJECTIVES: 1. STIMULATE RESEARCH THAT WILL ADDRESS THE CHALLENGES FACED BY THOSE WITH PWS. 2. SUPPORT RESEARCH THAT DIRECTLY DEVELOPS AND EVALUATES NEW THERAPEUTIC APPROACHES TO PWS. 3. SUPPORT INNOVATIVE RESEARCH THAT WILL LEAD TO SIGNIFICANT ADVANCES IN UNDERSTANDING PWS. 4. SUPPORT EARLY STUDIES THAT ALLOW INVESTIGATORS TO OBTAIN THE NECESSARY DATA TO SUPPORT FURTHER INVESTIGATION OF PWS. 5. INVOLVE PARENTS IN THE PROCESS OF IDENTIFYING RELEVANT AREAS OF RESARCH AND SELECTING THE MOST DESERVING RESEARCH PROPOSALS. TO REACH THESE OBJECTIVES, FPWR TARGETS THE FOLLOWING GROUPS FOR ALLOCATION OF RESEARCH GRANTS, ALL WITH THE GOAL OF BROADENING THE BASE OF RESEARCH DONE ON PWS: 1. NEW INVESTIGATORS TO HELP THEM ESTABLISH CAREERS IN PWS RESEARCH. 2. WELL ESTABLISHED NON-PWS INVESTIGATORS TO HELP THEM BRING EXPERTISE IN RELEVANT AREAS OF RESEARCH TO ADDRESS THE PROBLEMS ASSOCIATED WITH PWS. 3. ESTABLISHED PWS INVESTIGATORS TO HELP THEM INITIATE NEW LINES OF PWS RESEARCH. PART I, LINE 3: THE ORGANIZATION USES THE ACCRUAL METHOD OF ACCOUNTING TO ACCOUNT FOR ITS FOREIGN EXPENDITURES. HAMPTON EVENT 247766 146616 101150 2000 33900 3800 13714 IGGS FESTIVAL 198131 52381 145750 7 1129480 971880 157600 1126 1575377 1170877 404500 2000 33900 3800 14840 54540 349960 1 CHILDREN'S HOSPITAL COLORADO ANSCHUTZ MEDICAL CAMPUS 13123 EAST 16TH AVENUE AURORA CO 80045 840166760 501(C)(3) 10000 0 RESEARCH SEATTLE CHILDREN'S HOSPITAL FOUNDATION PO BOX 5371 MS 818-S SEATTLE WA 98145 911156519 501(C)(3) 14860 0 RESEARCH UNIVERSITY OF CONNECTICUT 438 WHITNEY ROAD EXTENSION UNIT 1133 STORRS CT 06269 521725543 501(C)(3) 19999 0 RESEARCH CHILDREN'S MERCY HOSPITAL KANSAS CITY PO BOX 803852 KANSAS CITY MO 641803852 440605373 501(C)(3) 22140 0 RESEARCH COOK CHILDREN'S MEDICAL CENTER DODSON II BLDG 2ND FL FORT WORTH TX 76104 752705881 501(C)(3) 22680 0 RESEARCH JOHN HOPKINS UNIVERSITY SCHOOL OF MEDICINE 733 N BROADWAY STE 117 BALTIMORE MD 212051832 510595110 501(C)(3) 71548 0 RESEARCH HARVARD UNIVERSITY 330 BROOKLINE AVE BOSTON MA 02215 042103580 501(C)(3) 86400 0 RESEARCH CASE WESTERN RESERVE UNIVERSITY 10900 EUCLID AVE NORD HALL STE 615 CLEVELAND OH 441067037 341018992 501(C)(3) 132558 0 RESEARCH UNIVERSITY OF TENNESSEE 910 MADISON AVE STE 823 MEMPHIS TN 38163 626001636 501(C)(3) 150000 0 RESEARCH HARVARD COLLEGE 1033 MASSACHUSETTS AVENUE CAMBRIDGE MA 02138 042103580 501(C)(3) 161999 0 RESEARCH SAINT LOUIS UNIVERSITY SCHOOL OF MEDICINE FUSZ MEMORIAL HALL 3RD FL 3700 WEST PINE MALL ST LOUIS MO 63108 430654872 501(C)(3) 162000 0 RESEARCH STANFORD UNIVERSITY SCHOOL OF MEDICINE 291 CAMPUS DRIVE STANFORD CA 94305 770465765 501(C)(3) 162000 0 RESEARCH UNIVERSITY OF CHICAGO 6054 SOUTH DREXEL AVE STE 300 CHICAGO IL 60637 362177139 501(C)(3) 162000 0 RESEARCH THE OHIO STATE UNIVERSITY 1960 KENNY RD ACCOUNTING DEPT 4TH FL COLUMBUS OH 432101063 316025986 501(C)(3) 215990 0 RESEARCH COLUMBIA UNIVERSITY 1150 ST NICHOLAS AVENUE NEW YORK NY 10032 135598093 501(C)(3) 362307 0 RESEARCH MASSACHUSETTS GENERAL HOSPITAL 125 NASHUA STREET SUITE 540 BOSTON MA 02114 041564655 501(C)(3) 472646 0 RESEARCH PART I, LINE 2: THE ORGANIZATION HAS PROCEDURES FOR MONITORING THE USE OF GRANT FUNDS TO ENSURE THAT SUCH GRANTS ARE USED FOR INTENDED PURPOSES AND NOT OTHERWISE DIVERTED FROM THE INTENDED USE. GRANTEES ARE REQUIRED TO COMPLETE A REPORT OF THEIR EXPENDITURES AT THE END OF THE GRANT PERIOD, AND PROVIDE THE REPORT TO THE ORGANIZATION. ADDITIONAL INFORMATION ABOUT THE PURPOSES OF THE ORGANIZATION'S GRANTS AND SELECTION PROCESS IS INCLUDED BELOW. THE FOUNDATION FOR PRADER-WILLI RESEARCH (FPWR) IS DEDICATED TO SUPPORTING RESEARCH TO ADVANCE THE UNDERSTANDING AND TREATMENT OF PRADER-WILLI SYNDROME (PWS). WE INVITE APPLICATIONS FOR FUNDING ON AN ANNUAL OR SEMIANNUAL BASIS, IN RESPONSE TO A REQUEST FOR APPLICATIONS. FPWR ACCEPTS APPLICATIONS IN ALL AREAS OF RESEARCH RELEVANT TO PWS, BUT WE ARE PARTICULARLY INTERESTED IN SUPPORTING PROJECTS THAT WILL LEAD TO NEW INTERVENTIONS TO ALLEVIATE THE SYMPTONS ASSOCIATED WITH PWS. FPWR ACCEPTS APPLICATIONS FROM ACADEMIC, GOVERNMENT, NON-PROFIT, OR FOR-PROFIT RESEARCH ENTITIES. ACADEMIC RESEARCH APPLICANTS SHOULD HAVE A PRIMARY FACULTY APPOINTMENT AT THE LEVEL OF INSTRUCTOR OR HIGHER. THIS GRANT PROGRAM WILL BE USEFUL FOR JUNIOR FACULTY IN THE EARLY STAGES OF THEIR CAREERS, ESTABLISHED INVESTIGATORS IN OTHER AREAS OF RESEARCH WHO WISH TO ENTER THE FIELD OF PWS RESEARCH, OR INVESTIGATORS IN THE PWS FIELD WHO ARE SEEKING FUNDING TO SUPPORT PILOT STUDIES IN A NEW AREA OF PWS RESEARCH. FPWR SEEKS TO SUPPORT INNOVATIVE, HIGH-RISK/HIGH REWARD RESEARCH IN ITS EARLY STAGES. APPLICATIONS MEETING THE TECHNICAL REQUIREMENTS ARE REVIEWED BY SCIENTIFIC REVIEWERS, WHO HAVE EXPERTISE IN THE RESEARCH AREA, AS WELL AS AN ADVOCATE REVIEWER WHO EVALUATES THE RELEVANCE OF THE PROPOSED RESEARCH TO THE PWS COMMUNITY. FINAL FUNDING DECISIONS ARE BASED ON SCIENTIFIC MERIT, RELEVANCE TO PWS, AND THE SUITABILITY OF THE RESEARCH WITH RESPECT TO THE PROGRAMMATIC GOALS OF FPWR. X X X 0 0 0 0 0 0 0 0 0 THERESA STRONG DIRECTOR OF RESEARCH PROGR 168974 0 0 0 0 0 0 0 0 0 168974 0 0 0 FORM 990, PART V, LINE 2B: THE ORGANIZATION CONTRACTED WITH A PROFESSIONAL EMPLOYER ORGANIZATION (PEO) FOR SERVICES, INCLUDING BUT NOT LIMITED TO, PAYROLL, TIMEKEEPING, EMPLOYEE BENEFITS, HR ADMINISTRATION, AND WORKFORCE REGULATORY COMPLIANCE NEEDS. AS THE EMPLOYER OF RECORD FOR TAX PURPOSES, FORMS W-2 AND W-3 ARE ISSUED BY THE PEO AND FILED UNDER THE PEO'S FEDERAL EIN. IN THIS CO-EMPLOYMENT ARRANGEMENT, THE ORGANIZATION IS THE COMMON LAW EMPLOYER AND, ACCORDINGLY, COMPENSATION IS REPORTED ON FORM 990, PART VII, SECTION A AND PART IX, LINES 5-10. FORM 990, PART VI, SECTION B, LINE 11B THE ORGANIZATION HAS ITS FORM 990 PREPARED BY AN OUTSIDE ACCOUNTING FIRM. IT IS REVIEWED BY THE EXECUTIVE DIRECTOR AND A COMPLETE COPY IS PROVIDED TO ALL MEMBERS OF THE GOVERNING BODY FOR THEIR REVIEW PRIOR TO FILING. FORM 990, PART VI, SECTION B, LINE 12C THE BOARD OF DIRECTORS AND THE GOVERNANCE COMMITTEE ARE RESPONSIBLE FOR DETERMING AND REVIEWING CONFLICTS OF INTEREST. ALL BOARD MEMBERS AND OFFICERS ARE REQUIRED TO SELF-DISCLOSE CONFLICTS AS THEY ARISE AS WELL AS ANNUALLY SIGN A DISCLOSURE FORM NOTING ANY POTENTIAL CONFLICTS OF INTEREST. SUCH PERSONS MAY MAKE A PRESENTATION AT THE GOVERNING BOARD OR COMMITTEE MEETING, BUT AFTER THE PRESENTATION, THEY MUST LEAVE DURING THE DISCUSSION OF, AND THE VOTE ON, THE TRANSACTION OR ARRANGEMENT. FORM 990, PART VI, SECTION B, LINE 15A THE PROCESS FOR DETERMINING THE COMPENSATION OF THE CEO INCLUDED THE USE OF COMPARABILITY DATA, REVIEW AND APPROVAL BY THE EXECUTIVE COMMITTE OF THE BOARD, AND CONTEMPORANEOUS DOCUMENTATION. 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 XI, LINE 9: IMPAIRMENT OF MISSION RELATED INVESTMENT -24,682. RETURN OF PRIOR YEAR GRANT EXPENSE 22,681. DEPRECIATION ADJUSTMENT 90. FORM 990, PART XII, LINE 2C: THE ORGANIZATION HAS A COMMITTEE THAT ASSUMES RESPONSIBILITY FOR THE OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS AND THE SELECTION OF AN INDEPENDENT ACCOUNTANT. THIS PROCESS DID NOT CHANGE FROM THE PRIOR YEAR.