2023-11-15T14:26:07-06:00 2022-12-31 873231666 PKF O'CONNOR DAVIES LLP 245 PARK AVENUE 12TH FLOOR NEW YORK NY 10167 990 2022-01-01 311763110 FOUNDATION FOR PRADER-WILLI RESEARCH INC FOUN 8883225487 440 N BARRANCA AVE 3620 COVINA CA 91723 SUSAN HEDSTROM EXECUTIVE DIRECTOR 8883225487 2023-11-15 1 SUSAN HEDSTROM 999009999 1 EVA MRUK P00543254 9143818900 2023-11-15 3 AAL1 IAL1 2022 2023-04-26 12:10:37Z X SUSAN HEDSTROM 440 N BARRANCA AVE 3620 COVINA CA 91723 5326703 0 X WWW.FPWR.ORG X 2001 NY SUPPORTS RESEARCH TO ADVANCE THE UNDERSTANDING AND TREATMENT OF PRADER-WILLI SYNDROME 11 11 12 50 0 0 3612120 4654934 235036 231217 16585 83302 -24782 114484 3838959 5083937 1757456 3615813 0 0 939676 791170 0 0 245248 452478 681514 3149610 5088497 689349 -4560 6744610 8344580 1473233 3233878 5271377 5110702 TO ELIMINATE THE CHALLENGES OF PRADER WILLI SYNDROME THROUGH THE ADVANCEMENT OF RESEARCH AND THERAPEUTIC DEVELOPMENT. 0 0 4475469 3615813 246217 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-WILL 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. 4475469 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 1 0 0 0 0 0 0 0 0 1 X 5 0 12 1 0 0 0 0 0 1 1 0 0 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 PRESIDENT EFF. 3/22, TREASURER THRU 3/22 1.00 X X 0 0 0 JEANNINE KOWAL PRESIDENT THRU 3/22 1.00 X X 0 0 0 DREW HARMAN VICE PRESIDENT 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 DIRECTOR 0.50 X 0 0 0 DANIEL CHORNEY DIRECTOR THRU 3/22 0.50 X 0 0 0 JACK JONES DIRECTOR THRU 3/22 0.50 X 0 0 0 JUSTIN NELSON DIRECTOR 0.50 X 0 0 0 GUY NIEDORKOM DIRECTOR THRU 2/22 0.50 X 0 0 0 ALICIA SECOR DIRECTOR THRU 6/22 0.50 X 0 0 0 KAREN SHAHINIAN DIRECTOR 0.50 X 0 0 0 MIKE SIMS DIRECTOR 0.50 X 0 0 0 RENEE SNYDER DIRECTOR 0.50 X 0 0 0 JASON WALDROP DIRECTOR THRU 3/22 0.50 X 0 0 0 KRISTIN WHITE DIRECTOR 0.50 X 0 0 0 SUSAN HEDSTROM EXECUTIVE DIRECTOR 35.00 X 73353 0 125 THERESA STRONG DIRECTOR OF RESEARCH PROGRAM 40.00 X 158830 0 48 232183 0 173 1 0 1 0 0 867210 3787724 62404 4654934 CONFERENCE REVENUE 900099 231217 231217 231217 83302 15000 68302 62404 62404 0 0 294730 867210 180362 114368 114368 OTHER INCOME 900099 116 116 116 5083937 246217 0 182786 2843364 2843364 772449 772449 73478 36739 14696 22043 650581 504253 32773 113555 3792 2864 232 696 63319 47312 4150 11857 313 313 80235 80235 156854 24255 79770 52829 627 177 300 150 113593 20904 82819 9870 29941 1848 28093 58446 58426 20 112751 101364 1447 9940 49386 40482 4653 4251 1548 1548 17111 17111 PARTICIPANT INCENTIVES 47272 13633 13820 19819 AUDIO VISUAL EXPENSES 13437 7399 5800 238 5088497 4475469 367780 245248 416 4639 5717225 7975970 459250 39962 130629 56069 6967 6967 1548 0 5542 17940 430000 250000 6744610 8344580 61609 58654 1409874 3175224 1750 0 1473233 3233878 X 4990690 3449567 280687 1661135 5271377 5110702 6744610 8344580 X -4560 -156115 X X 0 1 X 1 0 X 3950192 3863432 3495770 3612120 4654934 19576448 3950192 3863432 3495770 3612120 4654934 19576448 4745966 14830482 40045 54246 26556 1677 83302 205826 2589 0 0 0 114368 116957 116 116 19899347 1225187 0.74530 0.81730 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2022 AMOUNT: $ 116. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 6967 6967 0 0 X 5083937 0 5083937 0 5083937 5244612 195000 195000 5049612 38885 38885 5088497 PART X, LINE 2: THE FOUNDATION RECOGNIZES THE EFFECT OF INCOME TAX POSITIONS ONLY IF THOSE POSITIONS ARE MORE LIKELY 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 2019. PART XII, LINE 2D - OTHER ADJUSTMENTS: IMPAIRMENT ON MISSION RELATED INVESTMENT 195,000. PART XII, LINE 4B - OTHER ADJUSTMENTS: RETURN OF PRIOR YEAR GRANTS EXPENSE 38,885. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS TO RECIPIENTS IN REGION FOR RESEARCH 502457 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS IN REGION FOR RESEARCH 269992 0 0 0 0 0 0 772449 0 772449 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 162000 WIRE TRANSFER 0 EAST ASIA AND THE PACIFIC RESEARCH 161992 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 161810 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 92247 WIRE TRANSFER 0 EAST ASIA AND THE PACIFIC RESEARCH 108000 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 86400 WIRE TRANSFER 0 6 0 0 0 0 0 0 0 PART I, LINE 2: THE ORGANIZATION (FPWR) HAS A PROFESSIONALLY 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 RESEARCH 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. PART III ACCOUNTING METHOD: HAMPTON EVENT 501200 435600 65600 50561 IGGS FESTIVAL 192172 163447 28725 3669 27627 3090 15400 6 468568 268163 200405 28244 22575 2050 27146 1161940 867210 294730 31913 50202 5140 93107 180362 114368 1 TEXAS TECH UNIVERSITY PO BOX 41105 LUBBOCK TX 79409 752668014 501(C)(3) 486000 0 RESEARCH MAIMONIDES MEDICAL CENTER 920 48TH STREET BROOKLYN NY 11219 111635081 501(C)(3) 165148 0 RESEARCH ROCKEFELLER UNIVERSITY 1230 YORK AVENUE NEW YORK NY 10065 131624158 501(C)(3) 162000 0 RESEARCH DUKE UNIVERSITY BOX 90281 101 SCIENCE DRIVE CIEMAS RM 2323 DURHAM NC 27708 560532129 501(C)(3) 162000 0 RESEARCH THE SCINTILLON INSTITUTE 6868 NANCY RIDGE DRIVE SAN DIEGO CA 92121 454323888 501(C)(3) 162000 0 RESEARCH CHICAGO SCHOOL OF PROFESSIONAL PSYCHOLOGY 325 NORTH WELLS STREET CHICAGO IL 60456 363005527 501(C)(3) 152667 0 RESEARCH VANDERBILT UNIVERSITY 2301 VANDERBILT PLACE NASHVILLE TN 37240 620476822 501(C)(3) 135589 0 RESEARCH VIRGINIA POLYTECHNIC INSTITUTE AND STATE UNIVERSITY 300 TURNER STREET NORTHWEST SUITE 4200 BLACKSBURG VA 24061 546001805 STATE OF VA 108000 0 RESEARCH GENERAL ELECTRIC LOCKBOX 645044 PITTSBURGH PA 15219 140689340 108000 0 RESEARCH MASSACHUSETTS GENERAL HOSPITAL 125 NASHUA STREET SUITE 540 BOSTON MA 02114 041564655 501(C)(3) 108000 0 RESEARCH UNIVERSITY OF MICHIGAN LITERATURE SCIENCE AND THE ARTS BUILDING 500 SOUTH STREET ANN ARBOR MI 48109 386006309 501(C)(3) 108000 0 RESEARCH ALBERT EINSTEIN COLLEGE OF MEDICINE 1300 MORRIS PARK AVENUE BRONX NY 10461 472209056 501(C)(3) 108000 0 RESEARCH THE UNIVERSITY OF ILLINOIS AT URBANA-CHAMPAIGN 387 MORRILL HALL MC-119 505 SOUTH GOODWIN AVENUE URBANA IL 61801 376000511 501(C)(3) 108000 0 RESEARCH ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI 1 GUSTAVE L LEVY PLACE NEW YORK NY 10029 136171197 501(C)(3) 108000 0 RESEARCH PRINCETON UNIVERSITY 127 FRICK CHEMISTRY LABORATORY PRINCETON NJ 08544 210634501 501(C)(3) 108000 0 RESEARCH STANFORD UNIVERSITY SCHOOL OF MEDICINE 291 CAMPUS DRIVE STANFORD CA 94305 770465765 501(C)(3) 108000 0 RESEARCH COLUMBIA UNIVERSITY 1150 ST NICHOLAS AVENUE NEW YORK NY 10032 135598093 501(C)(3) 106280 0 RESEARCH UT SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BOULEVARD DALLAS TX 75390 176002868 501(C)(3) 81000 0 RESEARCH SEATTLE CHILDREN'S HOSPITAL FOUNDATION PO BOX 5371 MS 818-S SEATTLE WA 98145 911156519 501(C)(3) 17500 0 RESEARCH UNIVERSITY OF UTAH HEALTH 50 NORTH MEDICAL DRIVE SALT LAKE CITY UT 84132 876000525 501(C)(3) 10000 0 RESEARCH STANFORD MEDICINE CHILDREN'S HEALTH 730 WELCH ROAD PALO ALTO CA 94304 770003859 501(C)(3) 10000 0 RESEARCH CHILDREN'S HOSPITAL COLORADO ANSCHUTZ MEDICAL CAMPUS 13123 EAST 16TH AVENUE AURORA CO 80045 840166760 501(C)(3) 10000 0 RESEARCH UNIVERSITY OF BUFFALO G10G FARBOR HALL BUFFALO NY 14214 161238821 501(C)(3) 7475 0 RESEARCH BRIGHAM AND WOMEN'S HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 042312909 501(C)(3) 161816 0 RESEARCH 23 1 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 SYMPTOMS 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 PROGRAM 158830 0 0 0 0 0 0 0 48 0 158878 0 0 0 X 9 62404 AVG. SELLING PRICE 0 0 0 0 PART I, COLUMN (B): THE ORGANIZATION IS REPORTING THE NUMBER OF CONTRIBUTIONS IN PART I, COL (B). PART V, LINE 2A 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 DETERMINING 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 COMMITTEE 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 -195,000. RETURN OF PRIOR YEAR GRANT EXPENSE 38,885. 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.