2021-01-29T11:51:35-06:00 2019-06-30 410746749 CLIFTONLARSONALLEN LLP 801 FELIX STREET ST JOSEPH MO 64501 990 2018-07-01 431266906 PKD FOUNDATION PKDF 8169312600 1001 E 101ST TER NO 220 KANSAS CITY MO 64131 ANDY BETTS CHIEF EXECUTIVE OFFICER 8169312600 2021-01-28 1 HAROLD RAY P01248589 8162328441 2021-01-28 2018 2022-09-23 18:48:47Z X ANDY BETTS 1001 E 101ST TER NO 220 KANSAS CITY MO 64131 8160246 0 X WWW.PKDCURE.ORG X 1982 MO WE GIVE HOPE. WE FUND RESEARCH, ADVOCATE FOR PATIENTS, AND BUILD A COMMUNITY FOR ALL IMPACTED BY PKD. 17 17 45 3593 0 0 12652147 6507595 0 0 170904 217531 127794 34477 12950845 6759603 1412624 2960317 0 0 3134496 3127659 235896 137813 932904 2948197 1944168 7731213 8169957 5219632 -1410354 11398154 10606466 1354476 1852410 10043678 8754056 X PROMOTE PROGRAMS OF RESEARCH, ADVOCACY, EDUCATION, SUPPORT AND AWARENESS IN ORDER TO DISCOVER TREATMENTS AND A CURE FOR POLYCYSTIC KIDNEY DISEASE AND IMPROVE THE LIVES OF ALL IT AFFECTS. 0 0 3757904 2637311 RESEARCH:SINCE ITS FOUNDING IN 1982, THE PKD FOUNDATION HAS INVESTED MORE THAN $50 MILLION IN MORE THAN 1,300 RESEARCH, CLINICAL AND SCIENTIFIC GRANTS, FELLOWSHIPS AND SCIENTIFIC MEETINGS. THE FOUNDATION'S FINANCIAL COMMITMENT OVER THE YEARS HAS SEEN RESULTS ON A LOCAL AND EVEN GLOBAL LEVEL, INCLUDING INITIATING FUNDING FOR YOUNG INVESTIGATORS FROM AROUND THE WORLD; SUPPORTING INNOVATIVE RESEARCH IDEAS; AND PROVIDING BRIDGE FUNDING TO RESEARCHERS WORLD-WIDE TO APPLY FOR LARGER NATIONAL INSTITUTES OF HEALTH (NIH) GRANTS. THE FOUNDATION'S FISCAL YEAR INVESTMENTS IN RESEARCH IS OUTLINED BELOW.RESEARCH GRANTS: INVESTED $1,800,000 ON GRANT FUNDING TO 23 PKD PROJECTS THAT FOCUS ON RISK FACTORS FOR PKD MANIFESTATIONS, BETTER UNDERSTANDING OF CELLULAR MECHANISMS THAT ACCELERATE PROGRESSION AND IDENTIFYING TARGETS FOR PKD. THE FOUNDATION ALSO COMMITTED TO FUNDING ONE JUNIOR INVESTIGATOR WITH A THREE-YEAR COMMITMENT THROUGH THE YOUNG INVESTIGATOR AWARD.FELLOWSHIPS: PROVIDED $450,000 IN FELLOWSHIP FUNDING TO 5 SUPPORT TRAINEES IN OBTAINING RESEARCH EXPERIENCE AS THEY INITIATE CAREERS IN PKD.CORE GRANTS: INVESTED $40,000 TO SUPPORT CORE RESEARCH GRANTS SERVICES AND RESOURCES FOR PKD SCIENTISTS IN A PROMINENT GENETIC LAB SO THAT FOUNDATION DOLLARS CAN BE LEVERAGED ACROSS THE PKD RESEARCH COMMUNITY. ADPKD REGISTRY: LED THE DEVELOPMENT AND IMPLEMENTATION OF THE NATION'S FIRST ADPKD PATIENT REGISTRY TO COLLECT VALUABLE DATA ABOUT THE PKD EXPERIENCE DIRECTLY FROM PATIENTS AND SUPPORT THE RECRUITMENT OF PARTICIPANTS FOR CLINICAL STUDIES. 939973 215337 EDUCATION AND SUPPORT:THE FOUNDATION PROVIDES LOCAL SERVICES THROUGH ITS MORE THAN 60 VOLUNTEER-RUN CHAPTERS ACROSS THE COUNTRY. THESE VOLUNTEERS BRING TO LIFE THE MISSION OF THE ORGANIZATION BY ENSURING THAT NO ONE FACES THIS DISEASE ALONE. EDUCATION MEETINGS PROVIDE VALUABLE INFORMATION FROM HEALTH CARE PROFESSIONALS, WHILE SUPPORT ACTIVITIES RANGE FROM LENDING A LISTENING EAR TO ORGANIZED GROUP OUTINGS. THE FOUNDATION HAS MORE THAN 1917 ACTIVE VOLUNTEERS.CHAPTERS RAISE FUNDS FOR THE FOUNDATION THROUGH EVENTS WHICH ALSO INCREASE AWARENESS OF PKD AND CONNECT LOCAL PATIENTS AND FAMILIES TO EACH OTHER. NINETY ONE CHAPTER FUNDRAISING AND THIRD- PARTY EVENTS WERE HELD THIS YEAR THAT RAISED $623,223. CHAPTERS ALSO RAISE AWARENESS AND MONEY THROUGH THE WALK FOR PKD, THE FOUNDATION'S SIGNATURE FUNDRAISING AND PUBLIC AWARENESS EVENT. THE WALK TOOK PLACE IN 54 CITIES ACROSS THE NATION EACH YEAR AND HAS RAISED NEARLY $32 MILLION SINCE 2000.ON A NATIONAL LEVEL, THE FOUNDATION PROVIDES IN-DEPTH RESOURCES AND EDUCATION ABOUT LIVING WITH PKD TO EMPOWER PEOPLE TO MANAGE THEIR HEALTH. OFFERINGS INCLUDE WEBINARS, VIDEOS, A MULTI-FACETED WEBSITE (CONNECT.PKDCURE.ORG), ONLINE COMMUNITIES AND PRINT MATERIALS. ADDITIONALLY, WEBINARS WERE ATTENDED OR VIEWED BY 383 ATTENDEES.THE ARPKD/ADPKD PATIENT HANDBOOK IS AVAILABLE FOR PEOPLE WITH PKD TO HELP THEM NAVIGATE THEIR DISEASE. 110 HANDBOOKS WERE MAILED AND 430 DOWNLOADED. 1504821 107669 AWARENESS AND ADVOCACY:THE FOUNDATION RAISES AWARENESS THROUGH MARKETING AND PUBLIC RELATIONS SO PEOPLE KNOW WHAT PKD IS, WHAT THE FOUNDATION DOES, AND HOW TO GET INVOLVED. MARKETING MATERIALS INCLUDE PKD NEWS MONTHLY EMAIL NEWSLETTER, OTHER TARGETED EMAILS, DIRECT MAIL SOLICITATIONS, SOCIAL MEDIA, THE PKD BLOG AND PKDCURE.ORG. VOICES OF PKD (HTTPS://CONNECT.PKDCURE.ORG/VOICES-OF-PKD/) FEATURES TESTIMONIALS AND STORIES ABOUT PEOPLE'S EXPERIENCES WITH THE DISEASE. THE FOUNDATION HAS AN ACTIVE SOCIAL MEDIA COMMUNITY, REACHING MORE THAN 34,000 FACEBOOK FANS, 7,000 TWITTER FOLLOWERS, 5,000 INSTAGRAM FOLLOWERS, AND 1,500 LINKEDIN FOLLOWERS. PKDCURE.ORG RECEIVED 998,612 UNIQUE VISITS AND PKDCONNECTION.ORG RECEIVED 268,609 VISITS.THE FOUNDATION PLAYS A KEY ROLE IN LEGISLATIVE ADVOCACY TO SUPPORT PKD-RELATED INITIATIVES. THE PKD ADVOCACY ACTION CENTER (PKDCURE.ORG/ADVOCACY) SENT ADVOCACY ALERTS TO 13,000 PKD ADVOCATORS ABOUT LEGISLATIVE AND PUBLIC POLICY ISSUES IMPACTING PKD PATIENTS AND FAMILIES. THE FOUNDATION JOINS WITH OTHER KIDNEY DISEASE-RELATED ORGANIZATIONS IN EVENTS THAT ALLOW ADVOCATES TO MEET WITH MEMBERS OF CONGRESS TO RAISE AWARENESS OF PKD AND DISCUSS LEGISLATIVE PRIORITIES. 6202698 1 1 0 1 0 0 0 0 0 1 1 0 0 0 0 1 1 0 0 0 1 1 0 1 0 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 21 0 45 1 0 0 0 0 0 1 1 0 0 0 0 0 0 0 X 17 17 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 0 0 0 AK AL AR AZ CA CO CT FL GA HI IL KS KY MA MD ME MI MN MS NC ND NH NJ NM NV NY OH OK OR PA RI SC TN UT VA WA WI WV X X X STEPHANIE BRENDEL 8169312600 1001 E 101ST TER NO 220 KANSAS CITY MO 64131 X KLEE KLEBER CHAIR 2.00 X X 0 0 0 BEVERLY BENSON VICE-CHAIR 1.00 X X 0 0 0 BROCK NELSON TREASURER 1.00 X X 0 0 0 PAULA HUTCHINSON SECRETARY 1.00 X X 0 0 0 BILL BRAZELL DIRECTOR 1.00 X 0 0 0 ASHLEY BROWN DIRECTOR 1.00 X 0 0 0 KATHERINE DELL DIRECTOR 1.00 X 0 0 0 GEORGINA HABERMAN DIRECTOR 1.00 X 0 0 0 MICHELE KARL DIRECTOR 1.00 X 0 0 0 ANDREA KRINGSTEIN DIRECTOR 1.00 X 0 0 0 MICHAL MRUG DIRECTOR 1.00 X 0 0 0 DWIGHT ODLAND DIRECTOR 1.00 X 0 0 0 CRAIG RAMSEYER DIRECTOR 1.00 X 0 0 0 ROB ROTH DIRECTOR 1.00 X 0 0 0 FRAN TOWEY DIRECTOR 1.00 X 0 0 0 TERRY WATNICK DIRECTOR 1.00 X 0 0 0 JERRY WAXMAN DIRECTOR 1.00 X 0 0 0 ANDY BETTS PRESIDENT & CEO 40.00 X 235343 0 43959 DAVID BARON CHIEF SCIENTIFIC OFFICER 40.00 X 206170 0 35601 KENNETH MCLAUGHLIN COO - LEFT DECEMBER 2018 40.00 X 139329 0 35926 ALEXIS DENNY DIRECTOR OF GOVT AFFAIRS 40.00 X 106873 0 28601 SUSAN DEREMER DIRECTOR OF LEADERSHIP GIFTS 40.00 X 113440 0 13171 ROBIN STRACHAN - LEFT JULY 2019 PLANNED GIVING DIRECTOR 40.00 X 103943 0 9801 905098 0 167059 6 0 1 0 NEWPORT ONE 21 RAILROAD AVE DUXBURY MA 02332 FUNDRAISING SERVICE 145288 IQVIA TECHNOLOGY SERVICES 210 PENTONVILLE RD LONDON LONDON UK PATIENT REGISTRY AND CONSULTING FEES 103500 2 6507595 241596 6507595 145688 145688 1469294 1397451 71843 71843 71843 2256 3192 -936 -936 INSURANCE PROCEEDS 900099 35000 35000 MISCELLANEOUS INCOME 900099 413 413 35413 6759603 -936 0 252944 2620317 2620317 100000 100000 240000 240000 304800 167640 30481 106679 2120609 1204733 582968 332908 168397 95712 46725 25960 338031 191854 91147 55030 195822 110870 50182 34770 91196 69534 5125 16537 34050 25962 1914 6174 58899 58899 137813 137813 21230 21230 687619 609081 51189 27349 33108 33108 252437 189190 35645 27602 54250 30517 8449 15284 198229 127526 40500 30203 40010 40010 249621 171617 997 77007 146326 81519 37980 26827 27543 17866 5671 4006 DUES, FEES, MEMBERSHIPS 49650 16743 24152 8755 8169957 6202698 1034355 932904 X 201071 81098 0 119973 228084 560278 3156801 1336795 3772108 2888585 12287 26148 8089 12805 985578 245461 278353 740117 3925474 5024730 16958 17008 11398154 10606466 754476 852410 600000 1000000 1354476 1852410 X 3917718 4517567 5125960 3236489 1000000 1000000 10043678 8754056 11398154 10606466 -1410354 120732 0 X X 0 1 X 1 0 X 7539923 5881314 5709118 12652147 6507595 38290097 7539923 5881314 5709118 12652147 6507595 38290097 2668285 35621812 7014 31733 73444 100878 145688 358757 10839 30462 39617 130100 35413 246431 38895285 22656 0.91580 0.90330 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS INCOME - 2014 AMOUNT: $ 89. 2015 AMOUNT: $ 162. 2016 AMOUNT: $ 737. 2017 AMOUNT: $ 130,100. 2018 AMOUNT: $ 35,413. GROSS REVENUE FROM FUNDRAISING EVENTS - 2014 AMOUNT: $ 10,750. 2015 AMOUNT: $ 30,300. 2016 AMOUNT: $ 38,880. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 481510 456460 536097 1474067 2211101 85018 58865 60000 55000 258883 120378 114115 134024 368517 552776 4079744 409814 276814 148064 21231 4597077 2960433 1021831 222220 108000 16741 4079744 2773007 310566 108000 15140 2960433 2700000 77487 4480 2773007 0.78250 0.21750 0 0 69356 780 68576 916222 244681 671541 740117 X 7231115 120732 371784 226 492742 6738373 21230 21230 6759603 8520737 371784 226 372010 8148727 21230 21230 8169957 PART V, LINE 4: THE PURPOSE OF THE RESEARCH OPPORTUNITY FUND AND NAMED ENDOWMENTS (COLLECTIVELY REFERRED TO AS "ENDOWMENTS") IS TO PROVIDE FOR GROWTH-ORIENTED LONG-TERM INVESTMENT OF FUNDS THAT ARE NOT NEEDED TO MEET THE DAY-TO-DAY FINANCIAL OBLIGATIONS OF THE FOUNDATION. PART X, LINE 2: THE FOUNDATION IS EXEMPT FROM INCOME TAXES UNDER SECTION 501(C)(3) OF THE U.S. INTERNAL REVENUE CODE. THE FOUNDATION DOES NOT OPERATE AS A PRIVATE FOUNDATION. ALTHOUGH IT IS EXEMPT FROM FEDERAL AND STATE INCOME TAXES ON ITS PRINCIPAL OPERATIONS, THE FOUNDATION IS SUBJECT TO FEDERAL INCOME TAXES ON THE NET INCOME FROM ANY OPERATIONS IDENTIFIED BY THE INTERNAL REVENUE SERVICE TO GENERATE UNRELATED BUSINESS INCOME. NO SUCH UNRELATED BUSINESS INCOME TAX WAS INCURRED DURING 2019 OR 2018. THE FOUNDATION FOLLOWS THE STANDARDS FOR EVALUATING UNCERTAIN TAX POSITIONS AND HAS DETERMINED NO LIABILITY SHOULD BE RECORDED FOR UNCERTAIN TAX POSITIONS. PART XI, LINE 2D - OTHER ADJUSTMENTS: COST OF GOODS SOLD FOR MERCHANDISE SALES 226. PART XII, LINE 2D - OTHER ADJUSTMENTS: COST OF GOODS SOLD FOR MERCHANDISE SALES 226. 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS LOCATED IN THE REGION N/A 80000 EAST ASIA & THE PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN THE REGION N/A 120000 0 0 0 0 0 0 200000 0 200000 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM INVESTIGATE ROLE OF MITOCHONDRIAL FITNESS IN PLYCYSTIC KIDNEY DISEASE PROGRESSION 80000 ACH TRANSFER BOOK EAST ASIA & THE PACIFIC UNDERSTANDING ROLE OF SOMANTIC VARIATION AND NOVEL MUTATIONAL MECHANISMS 120000 ACH TRANSFER BOOK 3 3 0 0 0 0 0 0 PART I, LINE 2: ALL GRANTEES ARE REQUIRED TO SUBMIT AN ANNUAL RESEARCH PROGRESS REPORT AND AN ANNUAL INSTITUTIONAL FINANCIAL STATUS REPORT. MOST GRANTEES ARE ALSO REQUIRED TO SUBMIT INTERIM QUARTERLY PROGRESS REPORTS. PART I, LINE 3: EXPENDITURES ARE REPORTED AT THE AMOUNT OF THE GRANT AWARDED AND ARE ACCOUNTED FOR USING THE SAME METHOD IN THE ORGANIZATION'S FINANCIAL STATEMENTS. X X X X X X 1 NEWPORT ONE 21 RAILROAD AVE DUXBURY MA 02332 MANAGED DIRECT MAIL EFFORTS 0 484158 158119 326039 484158 158119 326039 AK AL AR AZ CA CO CT FL GA HI IL KS KY MA MD ME MI MN MS NC ND NH NJ NM NV NY OH OK OR PA RI SC TN UT VA WA WI WV SCHEDULE G, PART I, LINE 2B, COLUMN (V) PAID PROFESSIONAL FUNDRAISER TO CREATE, PRINT AND SEND DIRECT MAIL CONTRIBUTION SOLICITATIONS. PAYMENTS WERE MADE BY CHECK. 1 YALE UNIVERSITY 25 SCIENCE PARK 150 MUNSEN STREET NEW HAVEN CT 065113572 060646973 501(C)(3) 80000 GENETIC APPROACH TO DEFINE MEDIATORS OF POLYCYSTIN-1 FUNCTION IN POLYCYSTIC KIDNEY DISEASE JOHNS HOPKINS UNIVERSITY 6005 HUNT RIDGE RD APT 3431 BALTIMORE MD 21210 520595110 501(C)(3) 80000 SMALL MOLECULE CORRECTORS REDUCE CYST GROWTH IN ADPKD NORTHWESTERN UNIVERSITY - ASRSP CASH MANAGEMENT 633 CLARK STREET EVANSTON IL 602081112 362167817 501(C)(3) 80000 THE MOLECULAR AND MECHANISTIC IMPACTS OF FINGER 1 VARIANTS ON PKD2 ION CHANNEL FUNCTION IN THE PRIMARY CILIA. YALE UNIVERSITY 35 BELL STREET GLASTONBURY CT 06033 060646973 501(C)(3) 80000 CONTROLLING THE VIABILITY OF PKD MUTANT CELLS VIA INACTIVATION OF XBP1 AS A NOVEL STRATEGY TO TREAT ADPKD UNIVERSITY OF KANSAS MEDICAL SCHOOL 10601 NW 75TH TERR KANSAS CITY MO 64152 481108830 501(C)(3) 80000 PRE-CLINICAL EVALUATION OF CASPASE 1 AS A THERAPEUTIC TARGET IN ADPKD. REGENTS OF UNIVERSITY OF COLORADO PO BOX 910238 DENVER CO 802910238 846000555 501(C)(3) 80000 UNDERSTANDING THE ROLE OF CD8+ T-CELLS IN HALTING RENAL CYSTOGENESIS MEDICAL UNIVERSITY OF SOUTH CAROLINA 19 HAGOOD AVE MSC 808 CHARLESTON SC 294035120 576000722 GOV 80000 EFFECTS OF DIETARY SALT RESTRICTION ON CYSTOGENESIS IN ARPKD MAYO CLINIC PO BOX 860334 MINNEAPOLIS MN 55486 416011702 501(C)(3) 80000 THE ROLES OF DNA METHYLATION IN AUTOSOMAL DOMINANT POLYCYSTIC KIDNEY DISEASE YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 065081873 060646973 501(C)(3) 80000 ROLE OF INTERSTITIAL CELLS IN RENAL CYSTOGENESIS UNIV OF KS MEDICAL CENTER RESEARCH INSTITUTE INC MSN 1039 3901 RAINBOW BLVD KANSAS CITY KS 661032937 481108830 501(C)(3) 80000 MECHANISM OF POLYCYSTIN-1-REGULATED G PROTEIN SIGNALING AND ITS ROLE IN THE PATHOGENESIS AND TREATMENT OF PKD UNIVERSITY OF MARYLAND 655 W BALTIMORE ST RBR 2-017A BALTIMORE MD 21201 526002033 501(C)(3) 80000 POLYCYSTIN-1 CLEAVAGE PRODUCT P100: DISTINCTIVE TOPOLOGY, SPECIFIC PROPERTIES, AND POLYCYSTIN-2-ASSOCIATED CHANNEL ACTIVITY REGENTS OF THE UNIVERSITY OF CALIFORNIA PO BOX 748872 LOS ANGELES CA 900744872 943067788 501(C)(3) 80000 UNDERSTANDING HOW THE CILIARY TRANSITION ZONE CONTROLS POLYCYSTIN-2 LOCALIZATION TO CILIA UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVE SOUTH LHRB 621 BIRMINGHAM AL 35294 636005396 501(C)(3) 80000 KIDNEY SPECIFIC DRUG DELIVERY USING NANOPARTICLES IN PKD1 MICE PRESIDENT AND FELLOWS OF HARVARD COLLEGE PO BOX 415649 BOSTON MA 022415649 042103580 501(C)(3) 80000 TAKING PKD OUT OF THE KIDNEY: DISSECTION OF POLYCYSTIN SIGNALING IN A NOVEL CELL-BASED SYSTEM UNIVERSITY OF MARYLAND SCHOOL OF MEDICINE 22 S GREENE ST ROOM N3W143 BALTIMORE MD 21201 526002033 501(C)(3) 80000 BAC TRANSGENESIS TO MODEL AN ANEURYSM-ASSOCIATED HUMAN MUTATION IN MICE CLEVELAND CLINIC FOUNDATION PO BOX 931531 CLEVELAND OH 441935012 912153073 501(C)(3) 80000 REGULATION OF CILIARY G-PROTEIN SIGNALING BY POLYCYSTIN-1 THE CHILDREN'S MERCY HOSPITAL PO BOX 803852 KANSAS CITY MO 641803852 440605373 501(C)(3) 80000 MOLECULAR CHARACTERIZATION OF CYST FORMATION IN A PORCINE MODEL OF EARLY ADPKD UNIVERSITY OF MARYLAND BALTIMORE PO BOX 41428 BALTIMORE MD 212036428 526002033 GOV 80000 DISRUPTION OF THE APICAL JUNCTIONAL COMPLEX IN CYSTOGENESIS AND ADPKD ST JOHN'S UNIVERSITY 8000 UTOPIA PARK QUEENS NY 11438 111630830 501(C)(3) 80000 THE ROLE OF POLYCYSTIN-1 IN THE POLYCYSTIN-1/POLYCYSTIN-2 ION CHANNEL COMPLEX BRIGHAM AND WOMEN'S HOSPITAL 77 AVENUE LOUIS PASTEUR 4 BLACKFAN CIRCLE BOSTON MA 02115 416011702 501(C)(3) 80000 ELUCIDATING THE CYSTOGENIC PROTEOME IN POLYCYSTIC KIDNEY DISEASE MAYO CLINIC PO BOX 860334 MINNEAPOLIS MN 55486 416011702 501(C)(3) 40000 ADPKD MUTATION DATABASE YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 065081873 060646973 501(C)(3) 60000 TARGETING THE CELL CYCLE AS A POTENTIAL TREATMENT FOR ADPKD: THE ROLE OF CYCLIN-DEPENDENT KINASE 1 MAYO CLINIC PO BOX 860334 MINNEAPOLIS MN 55486 416011702 501(C)(3) 60000 RESTORING CILIARY LEVEL OF FUNCTIONAL POLYCYSTINS AS A NOVEL THERAPEUTIC APPROACH FOR ADPKD TREATMENT UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 512 RATON PASS IRVING TX 75063 756002868 501(C)(3) 60000 INVESTIGATING THE M6A RNA METHYLATION PATHWAY AS A THERAPEUTIC OPTION FOR ADPKD TREATMENT UT SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 75390 756002868 501(C)(3) 60000 ROLE OF TULP3-MEDIATED CILIARY PROTEIN TRAFFICKING IN KIDNEY CYSTOGENESIS UNIVERSITY OF MARYLAND 737 WEST LOMBARD ST BALTIMORE MD 21201 526002033 501(C)(3) 60000 RELIEVING THE STRESS OF PKD: A NEW ROLE OF PKHD1 IN DETOXIFICATION MEDIATED VIA DIFFERENTIAL CLEAVAGE OF THE INTRACELLULAR DOMAIN UNIVERSITY OF COLORADO PO BOX 910238 DENVER CO 802910238 846000555 501(C)(3) 50000 PKD GENE THERAPY TARGETING THE 4E-BP1 PATHWAY KUMC KIDNEY INSTITUTE 4330 SHAWNEE MISSION PARKWAY FAIRWAY KS 66205 481108830 501(C)(3) 50000 TARGETING THE LKB1-AMPK SIGNALING PATHWAY IN POLYCYSTIC KIDNEY DISEASE YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 065081873 060646973 501(C)(3) 50000 GENETIC VARIANTS PREDISPOSING TO INTRACRANIAL ANEURYSM FORMATION IN ADPKD 16 16 KAPLAN PRIZES 2 100000 CASH VALUE PART I, LINE 2: ALL GRANTEES ARE REQUIRED TO SUBMIT AN ANNUAL RESEARCH PROGRESS REPORT AND AN ANNUAL INSTITUTIONAL FINANCIAL STATUS REPORT. MOST GRANTEES ARE ALSO REQUIRED TO SUBMIT INTERIM QUARTERLY PROGRESS REPORTS. X X X X 0 0 0 0 0 0 0 0 0 ANDY BETTS PRESIDENT & CEO 201793 0 33550 0 0 0 15153 0 28806 0 279302 0 0 0 DAVID BARON CHIEF SCIENTIFIC OFFICER 187450 0 18720 0 0 0 24500 0 11101 0 241771 0 0 0 KENNETH MCLAUGHLIN COO - LEFT DECEMBER 2018 90917 0 19000 0 29412 0 24500 0 11426 0 175255 0 0 0 X 28 12614 FAIR VALUE X 7 37744 FAIR VALUE X EVENT ITEMS 274 191238 FMV 0 0 1 1 PART I, LINE 32B: ORGANIZATION UTILIZES ONGOING BANKING RELATIONSHIPS TO MARKET DONATED SECURITIES. PART I, SECTION B THE FORM IS AMENDED TO SHOW THE DOLLAR AMOUNTS OF JOINT COSTS ON PART IX, LINE 26, WHICH WERE PREVIOUSLY OMITTED. FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 IS PREPARED BY AN INDEPENDENT ACCOUNTING FIRM. PRIOR TO FILING THE FORM 990 FOR PKD FOUNDATION, A DRAFT COPY WILL BE PROVIDED TO THE BOARD OF TRUSTEES FOR REVIEW AND COMMENT. ANY COMMENTS WILL BE ACCUMULATED BY MANAGEMENT AND ADDRESSED ACCORDINGLY PRIOR TO FILING WITH THE IRS. FORM 990, PART VI, SECTION B, LINE 12C MEMBERS OF THE BOARD OF TRUSTEES OF PKD FOUNDATION ARE REQUIRED TO SIGN AN ANNUAL STATEMENT DISCLOSING ANY CONFLICTS OF INTEREST. THE GOVERNANCE COMMITTEE REVIEWS THE STATEMENTS AND ENSURES THAT BOARD MEMBERS ARE PROHIBITED FROM PARTICIPATING IN DISCUSSIONS OR DECISIONS RELATED TO TRANSACTIONS THAT INVOLVE ACTUAL CONFLICTS OF INTEREST. FORM 990, PART VI, SECTION B, LINE 15 ANNUALLY, THE CHAIRMAN OF THE BOARD OF TRUSTEES WORKS WITH THE CEO TO DEVELOP THE CEO'S GOALS FOR THE NEW FISCAL YEAR. AT THE END OF EACH FISCAL YEAR, THE EXECUTIVE COMMITTEE EVALUATES THE CEO AGAINST THESE GOALS AND RECOMMENDS TO THE BOARD THE CEO'S COMPENSATION PACKAGE FOR APPROVAL, BASED ON THIS EVALUATION. THE CEO'S COMPENSATION WAS LAST REVIEWED IN 2018. 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 ON THEIR OWN WEBSITE AND UPON REQUEST. FORM 990, PART VII, SECTION A, LINE 1: PKD FOUNDATION CONTRACTS WITH ADP TOTALSOURCE TO PROVIDE CERTAIN EMPLOYEE BENEFITS AND PAYROLL SERVICES. EMPLOYEES ARE CONSIDERED TO BE JOINTLY EMPLOYED BY BOTH PKD FOUNDATION AND ADP TOTALSOURCE. IN ORDER TO COMPLY WITH TRANSPARENCY DIRECTIVES AS A PART OF THE FORM 990, THE FOUNDATION HAS DECIDED TO REPORT COMPENSATION IN PART VII TO INCLUDE AMOUNTS PAID AND REPORTED ON W-2'S BY ADP TOTALSOURCE. FORM 990, PART XII, LINE 2C: NO CHANGE FROM THE PRIOR YEAR.