2020-11-16T09:21:32-06:00 2019-12-31 271728945 PKF O'CONNOR DAVIES LLP 665 FIFTH AVENUE NEW YORK NY 10022 990 2019-01-01 311763110 FOUNDATION FOR PRADER-WILLI RESEARCH INC FOUN 8883225487 340 S LEMON AVE NO 3620 WALNUT CA 917892706 JOHN WALTER CEO 8883225487 2020-11-16 1 GARRETT M HIGGINS P00543209 9143818900 2020-11-16 66.108.235.87 2020-11-16 08:37:11 ES P DA39A3EE5E6B4B0D3255BFEF95601890AFD80709 8B9532C6912B3E39A4E7E5ED0BE6E8176682D039 2019 2021-01-29 14:40:06Z SUSAN HEDSTROM 340 S LEMON AVE NO 3620 WALNUT CA 917892706 4185722 0 X WWW.FPWR.ORG X 2001 NY SUPPORTS RESEARCH TO ADVANCE THE UNDERSTANDING AND TREATMENT OF PRADER-WILLI SYNDROME 16 16 11 100 0 0 3950192 3863432 159797 223944 40045 54246 2589 -79297 4152623 4062325 1739078 2534954 0 0 1097677 1173370 38302 8390 311458 718862 777292 3593919 4494006 558704 -431681 5481978 5712409 1299792 2108729 4182186 3603680 TO ELIMINATE THE CHALLENGES OF PRADER WILLI SYNDROME THROUGH THE ADVANCEMENT OF RESEARCH AND THERAPEUTIC DEVELOPMENT. 0 0 3750071 2534954 223944 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. 3750071 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 17 0 11 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 16 16 0 1 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 AL AR CA CT FL GA HI IL KS KY ME MA MD MI MN MS NH NJ NY NC ND OK OR PA RI SC TN UT VA WV WI X X JONES & ASSOCIATES 3237829391 6300 WILSHIRE BLVD STE 860 LOS ANGELES CA 90048 JOHN WALTER CEO 40.00 X 270465 0 35156 NATHALIE KAYADJANIAN DIRECTOR OF TRANSLATIONAL RESEARCH 40.00 X 181695 0 6699 THERESA STRONG DIRECTOR OF RESEARCH PROGRAMS 40.00 X 149861 0 92 SUSAN HEDSTROM EXECUTIVE DIRECTOR 40.00 X 71284 0 32 DANIEL CHORNEY PRESIDENT 1.00 X X 0 0 0 ALICIA SECOR VICE PRESIDENT 0.50 X X 0 0 0 JEANNINE KOWAL SECRETARY 0.50 X X 0 0 0 JASON WALDROP - TREASURER (THRU 05/2019); BOARD MEMBER 0.50 X X 0 0 0 BRENT SNYDER TREASURER 0.50 X X 0 0 0 IAN ALBERG BOARD MEMBER 0.50 X 0 0 0 SCOTT ARANT BOARD MEMBER 0.50 X 0 0 0 DANA CAPOBIANCO BOARD MEMBER 0.50 X 0 0 0 BRIAN DULA BOARD MEMBER 0.50 X 0 0 0 KATIE GILLIAM BOARD MEMBER 0.50 X 0 0 0 DREW HARMAN BOARD MEMBER 0.50 X 0 0 0 JACK JONES BOARD MEMBER 0.50 X 0 0 0 GUY NIEDORKOM BOARD MEMBER 0.50 X 0 0 0 DAVID PFIEFFER BOARD MEMBER 0.50 X 0 0 0 JONATHAN SEBAT BOARD MEMBER 0.50 X 0 0 0 PAUL WISSMAN BOARD MEMBER 0.50 X 0 0 0 673305 0 41979 3 0 1 0 MEDICAL RESEARCH COUNCIL (MRC) UK SBS AC CARDIFF ROAD NEWPORT UK NP10 8QQ 01 RESEARCH SERVICES 294810 DOUBLETREE NEW ORLEANS 300 CANAL STREET NEW ORLEANS LA 70130 CONFERENCE SERVICES 107614 2 243990 3619442 2920 3863432 CONFERENCE REVENUE 900099 223944 223944 223944 54246 54246 44100 243990 123397 -79297 -79297 4062325 223944 0 -25051 1760214 1760214 774740 774740 565331 380632 74990 109709 524184 352929 69532 101723 6296 4239 835 1222 77559 52220 10288 15051 24166 16270 3206 4690 3450 3450 54253 54253 8390 8390 212928 94917 118011 2652 2652 139245 37027 62462 39756 22144 173 8827 13144 80704 64728 9937 6039 86077 85758 319 774 774 12553 12553 OTHER EXPENSES 114457 102445 278 11734 AUDIO VISUAL EXPENSES 23889 23779 110 4494006 3750071 432477 311458 50123 431 3841983 5301292 73165 183738 24977 64235 6967 774 0 6193 1491730 6520 150000 5481978 5712409 244600 89961 1055192 2018768 1299792 2108729 X 3851584 3205976 330602 397704 4182186 3603680 5481978 5712409 -431681 25975 -172800 0 X X 0 1 X 1 0 X 2936741 3359978 3245876 3950192 3863432 17356219 2936741 3359978 3245876 3950192 3863432 17356219 2623309 14732910 7128 17552 25649 40045 54246 144620 2589 2589 17503428 383741 0.84170 0.85500 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 6967 774 6193 6193 X 4088300 25975 25975 4062325 0 4062325 4494006 0 4494006 0 4494006 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 2016. 1 EUROPE (INCLUDING ICELAND & GREENLAND) GRANTS TO RECIPIENTS IN REGION FOR RESEARCH 299275 NORTH AMERICA GRANTS TO RECIPIENTS IN REGION FOR RESEARCH 218000 EAST ASIA AND THE PACIFIC GRANTS TO RECIPIENTS IN REGION FOR RESEARCH 254348 MIDDLE EAST AND NORTH AFRICA GRANTS TO RECIPIENTS IN REGION FOR RESEARCH 3117 0 0 0 0 0 0 774740 0 774740 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 95598 WIRE TRANSFER EAST ASIA AND THE PACIFIC RESEARCH 97200 WIRE TRANSFER EAST ASIA AND THE PACIFIC RESEARCH 7920 WIRE TRANSFER NORTH AMERICA RESEARCH 110000 WIRE TRANSFER EAST ASIA AND THE PACIFIC RESEARCH 149228 WIRE TRANSFER NORTH AMERICA RESEARCH 108000 WIRE TRANSFER EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 108000 WIRE TRANSFER EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 92077 WIRE TRANSFER 8 0 0 0 0 0 0 0 PART I, LINE 2: THE FOUNDATION FOR PRADER-WILLI RESEARCH ("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 TARGET 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 EXPENSES REPORTED IN PART I, LINE 3 AND PART II ARE ACCOUNTED FOR USING THE ACCRUAL METHOD OF ACCOUNTING. PART III ACCOUNTING METHOD: IGGSF 186607 170607 16000 29473 10000 1331 PARS 4 PAYTON 97856 73256 24600 9320 6083 7446 5 3627 127 3500 14908 2244 400 42192 288090 243990 44100 24228 37800 10400 50969 123397 -79297 1 ALBERT EINSTEIN COLLEGE OF MEDICINE AND MONTEFIORE MEDICAL CENTER 111 E 210TH ST BRONX NY 10467 131740114 501(C)(3) 108000 RESEARCH CORNELL UNIVERSITY 341 PINE TREE ROAD ITHACA NY 14850 150532082 501(C)(3) 54000 RESEARCH JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE 733 N BROADWAY SUITE 117 BALTIMORE MD 21205 520595110 501(C)(3) 64800 RESEARCH MASSACHUSETTS GENERAL HOSPITAL 125 NASHUA ST SUITE 540 BOSTON MA 02114 041564655 501(C)(3) 145584 RESEARCH NYU WINTHROP HOSPITAL 259 FIRST STREET MINEOLA NY 11501 111633486 501(C)(3) 108000 RESEARCH PLEA AGENCY 733 SOUTH AVENUE PITTSBURGH PA 15221 237007910 501(C)(3) 34290 RESEARCH PURDUE UNIVERSITY 1281 WIN HENTSCHEL BLVD SUITE 1100 WEST LAFAYETTE IN 479064182 356002041 501(C)(3) 75598 RESEARCH ST JUDE CHILDREN'S RESEARCH HOSPITAL 262 DANNY THOMAS PLACE MEMPHIS TN 38105 620646012 501(C)(3) 108000 RESEARCH THE SALK INSTITUTE FOR BIOLOGICAL STUDIES 10010 NORTH TORREY PINES ROAD LA JOLLA CA 92037 952160097 501(C)(3) 200000 RESEARCH UNIVERSITY OF ALABAMA BOX 870136 TUSCALOOSA AL 35487 636001138 501(C)(3) 140811 RESEARCH UNIVERSITY OF ARIZONA PO BOX 41867 TUSCON AZ 85717 742652689 STATE OF AZ 64800 RESEARCH UNIVERSITY OF COLORADO DENVER 1800 GRANT STREET SUITE 600 DENVER CO 80203 846000555 501(C)(3) 23869 RESEARCH UNIVERSITY OF CONNECTICUT 263 FARMINGTON AVENUE FARMINGTON CT 06030 060772160 STATE OF CT 54000 RESEARCH UNIVERSITY OF FLORIDA 123 GRINTER HALL GAINESVILLE FL 32611 596002052 STATE OF FL 109516 RESEARCH UNIVERSITY OF IOWA 118 SOUTH CLINTON STREET IOWA CITY IA 52245 426004813 STATE OF IA 64800 RESEARCH UNIVERSITY OF MICHIGAN 500 S STATE STREET ANN ARBOR MI 48109 386006309 501(C)(3) 105300 RESEARCH UNIVERSITY OF PITTSBURGH PO BOX 371220 PITTSBURGH PA 15251 250965591 501(C)(3) 6000 RESEARCH UNIVERSITY OF TENNESSEE 910 MADISON AVENUE SUITE 823 MEMPHIS TN 38163 626001636 STATE OF TN 32400 RESEARCH YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 065081873 060646973 501(C)(3) 107999 RESEARCH 19 0 PART I, LINE 2: 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 1 0 JOHN WALTER CEO 245465 0 25000 0 0 0 0 0 35156 0 305621 0 0 0 NATHALIE KAYADJANIAN DIRECTOR OF TRANSLATIONAL RESEARCH 181695 0 0 0 0 0 0 0 6699 0 188394 0 0 0 PART I, LINE 7 JOHN WALTER AND SUSAN HEDSTROM RECEIVED A DISCRETIONARY BONUS IN 2019. THIS AMOUNT HAS BEEN INCLUDED IN THEIR TAXABLE COMPENSATION AND IS REPORTED ON SCHEDULE J, PART II, LINE B(II). FORM 990, PART VI, SECTION A, LINE 3 THE ORGANIZATION USES TRINET HR CORPORATION ("TRINET"), A PROFESSIONAL EMPLOYER ORGANIZATION ("PEO"), WHICH PROVIDES PROFESSIONAL EMPLOYER SERVICES. IN THE PEO RELATIONSHIP, TRINET AND THE ORGANIZATION SHARE CERTAIN RESPONSIBILITIES AND ALLOCATE OTHER EMPLOYER RESPONSIBILITIES INDIVIDUALLY. THE ORGANIZATION REMAINS AN EMPLOYER OF THE ORGANIZATION'S EMPLOYEES, AND TRINET IS A CO-EMPLOYER. THE ORGANIZATION HAS DIRECTION AND CONTROL OVER EMPLOYEES AS IS NECESSARY TO: CONDUCT ITS BUSINESS; DISCHARGE ANY FIDUCIARY RESPONSIBILITY IT MAY HAVE; AND COMPLY WITH ANY APPLICABLE LICENSURE, REGULATORY OR STATUTORY REQUIREMENT OF SOLAR ONE. IN ADDITION, THE ORGANIZATION HAS CONTROL OVER THE DAY-TO-DAY JOB DUTIES OF EMPLOYEES AND OVER THE JOB SITES AT WHICH OR FROM WHICH EMPLOYEES PERFORM SERVICES. TRINET RESERVES A RIGHT OF DIRECTION AND CONTROL OVER EMPLOYEES AS IS NECESSARY TO FULFILL ITS OBLIGATIONS AND PROVIDE ITS SERVICES UNDER AN AGREEMENT BETWEEN THE ORGANIZATION AND TRINET. TRINET AND THE ORGANIZATION HAVE A RIGHT TO HIRE, DISCIPLINE, AND TERMINATE EMPLOYEES AS TO EACH ONE'S EMPLOYMENT RELATIONSHIP WITH THE EMPLOYEES. FEE PAID TO TRINET IN 2019 WAS $24,166. FORM 990, PART VI, SECTION B, LINE 11B FOUNDATION FOR PRADER-WILLI RESEARCH INC. HAS ITS FORM 990 PREPARED BY AN OUTSIDE ACCOUNTING FIRM AND HAS ESTABLISHED THE FOLLOWING REVIEW PROCESS TO ENSURE THAT THE INFORMATION REPORTED IS COMPLETE AND ACCURATE. WHEN THE FORM 990 HAS BEEN PREPARED, REVIEWED BY MANAGEMENT AND IS READY TO BE FILED WITH THE INTERNAL REVENUE SERVICE, IT IS CIRCULATED AMONG BOARD MEMBERS WITH AN EXPLICIT DEADLINE FOR WHICH ANY COMMENTS MUST BE SUBMITTED BY. AFTER ALL COMMENTS ARE ADDRESSED, THE FORM 990 IS ELECTRONICALLY FILED WITH THE IRS. FORM 990, PART VI, SECTION B, LINE 12C THE BOARD MEMBERS REVIEW AND DISCUSS THE CONFLICT OF INTEREST POLICY ANNUALLY AT A BOARD MEETING. THE GOVERNING BOARD OR DELEGATED COMMITTEE IS RESPONSIBLE FOR DETERMINING AND REVIEWING CONFLICTS OF INTEREST. BOARD MEMBERS AND PRINCIPAL OFFICERS ARE REQUIRED TO SELF DISCLOSE AND THE BOARD HAS AN ADDITIONAL GOVERNANCE COMMITTEE. EACH MEMBER AND PRINCIPAL OFFICER IS THEN REQUIRED TO SIGN THE DISCLOSURE FORM AT THE MEETING NOTING CONFLICTS. AN INTERESTED PERSON MAY MAKE A PRESENTATION AT THE GOVERNING BOARD OR COMMITTEE MEETING, BUT AFTER THE PRESENTATION, HE/SHE SHALL LEAVE THE MEETING DURING THE DISCUSSION OF, AND THE VOTE ON, THE TRANSACTION OR ARRANGEMENT INVOLVING THE POSSIBLE CONFLICT OF INTEREST. FORM 990, PART VI, SECTION B, LINE 15A THE PROCESS FOR DETERMINING THE COMPENSATION OF THE CEO INCLUDED THE USE OF COMPARABILITY DATA, AND INCLUDED REVIEW AND APPROVAL BY THE EXECUTIVE COMMITTEE OF THE BOARD. THE PROCESS WAS DOCUMENTED AND LAST UNDERTAKEN IN 2019. COMPENSATION INCREASES FOR OTHER STAFF ARE RECOMMENDED BY THE CEO TO THE EXECUTIVE COMMITTEE, WHO REVIEWS AND APPROVES THESE INCREASES. 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. THE FORM 990 IS AVAILABLE AT WWW.GUIDESTAR.ORG. FORM 990, PART XII, LINE 2C: THE ORGANIZATION HAS A COMMITTEE THAT ASSUMES RESPONSIBILITY FOR OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS AND SELECTION OF AN INDEPENDENT ACCOUNTANT. THIS PROCESS DID NOT CHANGE FROM THE PRIOR YEAR.