2023-05-05T08:25:38-05:00 2022-06-30 FORVIS LLP 1201 Walnut Suite 1700 Kansas City MO 641062246 990 2021-07-01 431266906 PKD FOUNDATION % TOM ROSS PKDF 8169312600 1001 E 101ST TER Suite 220 KANSAS CITY MO 64131 CARMEN GLEASON COO 8169312600 2023-05-15 true CARMEN GLEASON 999009999 April Arnold CPA P01559426 8162216300 2023-05-15 2 2021 2023-04-26 12:10:37Z CHRIS RUSCONI 1001 E 101ST TER KANSAS CITY MO 64131 21997198 false X WWW.PKDCURE.ORG X 1982 MO PROMOTE PROGRAMS OF RESEARCH AND EDUCATION TO DISCOVER TREATMENTS AND A CURE FOR PKD. 11 10 31 1400 0 0 7628307 18319682 0 0 1194688 285943 131726 -132677 8954721 18472948 1789504 1898465 0 0 3112256 3325422 59295 75917 943027 1853581 2058513 6814636 7358317 2140085 11114631 25693539 31113409 3143870 620624 22549669 30492785 X WE GIVE HOPE. 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SCHEDULE D, 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 2021 OR 2020. THE FOUNDATION FOLLOWS THE STANDARDS FOR EVALUATING UNCERTAIN TAX POSITIONS AND HAS DETERMINED NO LIABILITY SHOULD BE RECORDED FOR UNCERTAIN TAX POSITIONS. SCHEDULE D, PART XI, LINE 2D LOSS ON DISPOSAL OF FIXED ASSETS $ 56,668 SPECIAL EVENT EXPENSES 210,396 --------- TOTAL $ 267,064 SCHEDULE D, PART XII, LINE 2D LOSS ON DISPOSAL OF FIXED ASSETS $ 56,668 SPECIAL EVENT EXPENSES 210,396 --------- TOTAL $ 267,064 true North America 0 0 Grantmaking 40000 East Asia and the Pacific 0 0 Grantmaking 40000 Europe (Including Iceland and Greenland) 0 0 Grantmaking 160000 0 0 0 0 240000 240000 North America PKD RESEARCH 40000 WIRE East Asia and the Pacific PKD RESEARCH 40000 WIRE Europe (Including Iceland and Greenland) PKD RESEARCH 80000 WIRE Europe (Including Iceland and Greenland) PKD RESEARCH 80000 WIRE 4 0 false false false false false false SCHEDULE F, PART I, LINE 2 GRANTS ARE TWO YEAR COMMITMENTS AND REQUIRE AN INTERIM REPORT AFTER YEAR ONE AND A FINAL REPORT AFTER YEAR TWO. BOTH REPORTS REQUIRE A SUMMARY OF RESEARCH ACCOMPLISHMENTS VERSUS THE SPECIFIC AIMS OF THE GRANT, AND A RECONCILIATION OF THE USE OF GRANT FUNDS VERSUS THE APPROVED BUDGET. SCHEDULE F, 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. NEWPORT ONE DIRECT MAIL false WALK FOR PKD 978634 924929 53705 18284 7961 20917 CONFERENCE/PKDC 265700 265700 12683 43999 1 935290 911829 23461 106552 2179624 2102458 77166 30967 7961 171468 210396 -133230 true CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVENUE CINNCINNATI OH 45229 310833936 501(C)(3) 80000 INVESTIGATOR GRANT CLEVELAND CLINIC FOUNDATION 9500 EUCLID AVENUE CLEVELAND OH 44193 340714585 501(C)(3) 80000 INVESTIGATOR GRANT ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI ONE GUSTAVE L LEVY PLACE NEW YORK NY 10029 136171197 501(C)(3) 80000 INVESTIGATOR GRANT CHILDRENS HOSPITAL OF PHILADELPHIA RESEARCH 3401 CIVIC CENTER BLVD PHILADELPHIA PA 19104 231352166 501(C)(3) 80000 INVESTIGATOR GRANT UNIVERSITY OF COLORADO DENVER 1800 GRANT STREET SUITE 600 DENVER CO 80203 846000555 501(C)(3) 190000 INVESTIGATOR GRANT / DRUG REPURPOSING MEDICAL COLLEGE OF WISCONSIN 8701 WATERTOWN PLANK RD MILWAUKEE WI 53226 390806261 501(C)(3) 80000 INVESTIGATOR GRANT UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 75390 756002868 GOVT 80000 INVESTIGATOR GRANT UNIVERSITY OF KANSAS MEDICAL CENTER RESEARCH INST 3901 RAINBOW BLVD KANSAS CITY KS 66160 481108830 501(C)(3) 160000 INVESTIGATOR GRANT UNIVERSITY OF OKLAHOMA HEALTH SCIENCE CENTER 862 RESEARCH PKWY SUITE 450 OKLAHOMA CITY OK 73104 731563627 GOVT 80000 INVESTIGATOR GRANT UNIVERSITY OF SOUTHERN CALIFORNIA 3500 SOUTH FIGUEROA STREET SUITE 1 LOS ANGELES CA 90089 951642394 501(C)(3) 30000 DRUG REPURPOSING UNIVERSITY OF CALIFORNIA SAN FRANCISCO 1855 FOLSOM STREET SUITE 425 SAN FRANCISCO CA 94143 946036493 501(C)(3) 60000 FELLOWSHIP GRANT UNIVERSITY OF ALABAMA AT BIRMINGHAM 801 5TH AVENUE SOUTH BIRMINGHAM AL 35233 636005396 501(C)(3) 60000 FELLOWSHIP GRANT YALE UNIVERSITY 150 MUNSON STREET NEW HAVEN CT 06511 060646973 501(C)(3) 140000 INVESTIGATOR GRANT / FELLOWSHIP GRANT MAYO CLINIC 200 FIRST STREET SW ROCHESTER MN 55905 416011702 501(C)(3) 100000 FELLOWSHIP GRANT / CENTER OF EXCELLENCE RUTGERS 33 KNIGHTSBRIDGE RD PISCATAWAY NJ 08854 226001086 GOVT 60000 FELLOWSHIP GRANT 15 0 KAPLAN AWARD 1 50000 SCHEDULE I, PART I, LINE 2 ALL GRANTEES ARE REQUIRED TO SUBMIT AN ANNUAL RESEARCH PROGRESS REPORT AND AN ANNUAL INSTITUTIONAL FINANCIAL REPORT. X X X X false false false false false false false false false MICHAEL MRUG DIRECTOR 77975 0 0 0 0 0 0 0 0 0 77975 0 0 0 ANDREW BETTS CHIEF EXECUTIVE OFFICER 252341 0 24033 0 236 0 27638 0 36023 0 340271 0 0 0 CHRISTOPHER RUSCONI CHIEF RESEARCH OFFICER 191900 0 19000 0 393 0 21099 0 35698 0 268090 0 0 0 CHAD ISEMAN CHIEF ADVANCEMENT OFFICER 173760 0 16000 0 135 0 18167 0 30646 0 238708 0 0 0 SCHEDULE J PART II & FORM 990, PART VII, SECTION A, LINE 5 THE COMPENSATION REPORTED FOR MICHAL MRUG IS PAID BY THE UNIVERSITY OF ALABAMA, AN UNRELATED ORGANIZATION. THE AMOUNT REPORTED IS THE AMOUNT PAID TO THE UNIVERSITY DURING CALENDAR YEAR 2021 TO COVER A PERCENTAGE OF HIS COMPENSATION. X 15 34900 FAIR MARKET VALUE X 20 2467529 FAIR MARKET VALUE 1 false true true SCHEDULE M, PART I, COLUMN B THE NUMBERS IN THIS COLUMN ARE THE NUMBER OF CONTRIBUTIONS. SCHEDULE M, PART I, LINE 32B VENDOR ENGAGED FOR VEHICLE DONATIONS. PKD FOUNDATION RECEIVES PROCEEDS ONLY. FORM 990, PART III, LINE 4A RESEARCH: SINCE ITS FOUNDING IN 1982, THE FOUNDATION HAS INVESTED MORE THAN $50 MILLION IN RESEARCH, CLINICAL AND SCIENTIFIC GRANTS, AWARDS, FELLOWSHIPS AND SCIENTIFIC MEETINGS, MAKING IT THE LARGEST PRIVATE FUNDER OF POLYCYSTIC KIDNEY DISEASE (PKD) RESEARCH. THE FOUNDATION'S FINANCIAL COMMITMENT OVER THE YEARS HAS SEEN RESULTS ON A LOCAL, NATIONAL AND EVEN GLOBAL LEVEL, INCLUDING INITIATING FUNDING FOR YOUNG INVESTIGATORS FROM AROUND THE WORLD; SUPPORTING INNOVATIVE RESEARCH IDEAS; AND PROVIDING SEED FUNDING TO ALLOW RESEARCHERS WORLD-WIDE TO APPLY FOR LARGER NATIONAL INSTITUTE OF HEALTH (NIH) GRANTS. INITIATIVES INCLUDED IN RESEARCH ARE OUTLINED BELOW. RESEARCH GRANTS: SUPPORT FOR BASIC LABORATORY RESEARCH AIMED AT INCREASING UNDERSTANDING OF THE GENETIC AND PATHOLOGICAL PROCESSES INVOLVED IN PKD AS WELL AS RESEARCH WITH AN OBVIOUS OR DIRECT POTENTIAL TO ACCELERATE THE DEVELOPMENT OF POTENTIAL THERAPIES. RESEARCH FELLOWSHIPS: SUPPORT AND RECOGNIZE EARLY-CAREER SCIENTISTS WHOSE ACHIEVEMENTS AND POTENTIAL IDENTIFY THEM AS RISING STARS - THE NEXT GENERATION OF SCIENTIFIC LEADERS IN PKD RESEARCH. OUR FELLOWSHIPS AIM TO ATTRACT PROMISING TRAINEES WHO WILL OBTAIN SIGNIFICANT RESEARCH EXPERIENCE AS THEY INITIATE AND - WE HOPE - SPEND LONG AND PRODUCTIVE CAREERS IN PKD RESEARCH. PKD OUTCOMES CONSORTIUM (PKDOC): A SIGNIFICANT COLLABORATION BETWEEN THE FOUNDATION, CRITICAL PATH INSTITUTE, REPRESENTATIVES OF THE PHARMACEUTICAL INDUSTRY, PKD CLINICIANS, AND THE U.S. FOOD AND DRUG ADMINISTRATION (FDA). IT WAS CREATED TO FACILITATE CLINICAL TRIAL DEVELOPMENT FOR PKD THERAPIES BY ESTABLISHING A CLEAR REGULATORY PATHWAY FOR THE PHARMACEUTICAL INDUSTRY TO EVALUATE THE EFFECTIVENESS OF POTENTIAL TREATMENTS. ADPKD REGISTRY: AN ONLINE, DIRECT-TO-PATIENT, LONGITUDINAL REGISTRY FOR INDIVIDUALS DIAGNOSED WITH ADPKD IN THE UNITED STATES. THE REGISTRY ALSO PROVIDES TARGETED CLINICAL STUDY RECRUITMENT FOR BOTH ACADEMIC AND INDUSTRY-SPONSORED STUDIES IN PATIENTS. FORM 990, PART III, LINE 4B AWARENESS AND ADVOCACY: THE FOUNDATION USES MARKETING TO INCREASE DISEASE AWARENESS, PROMOTE THE FOUNDATION'S SERVICES, AND INSPIRE THE PUBLIC TO SUPPORT THE FOUNDATION'S MISSION. MARKETING MATERIALS INCLUDE PKD LIFE MAGAZINE, A MONTHLY EMAIL NEWSLETTER, SOCIAL MEDIA, THE PKD BLOG, AND PKDCURE.ORG. IN ADDITION, FOUNDATION REPRESENTATIVES AND VOLUNTEERS DIRECTLY ENGAGE LEGISLATORS TO ENCOURAGE SUPPORT OF LEGISLATION THAT INCREASES FUNDING FOR AND AWARENESS OF PKD. THE FOUNDATION ADVOCATES FOR PKD PATIENTS IN POLICYMAKING, DRUG DEVELOPMENT, AND REGULATORY DECISION-MAKING AT THE STATE AND FEDERAL LEVEL. OUR GOALS ARE TO RAISE AWARENESS AND FURTHER LEGISLATION, REGULATION, AND FEDERAL FUNDING OPPORTUNITIES THAT IMPROVE THE LIVES OF EVERYONE IN THE PKD COMMUNITY. FORM 990, PART III, LINE 4C EDUCATION AND SUPPORT: THE PKD FOUNDATION SUPPORTS THE PKD COMMUNITY THROUGH MORE THAN 55 VOLUNTEER-LED CHAPTERS ACROSS THE UNITED STATES. CHAPTERS PROVIDE MEANINGFUL OPPORTUNITIES FOR THE LOCAL COMMUNITY TO GATHER TOGETHER TO LEARN FROM EXPERTS OR IN SUPPORT OF EACH OTHER. CHAPTERS RAISE FUNDS FOR THE FOUNDATION THROUGH EVENTS LIKE COCKTAILS FOR A CURE AND THE WALK FOR PKD, THE FOUNDATION'S SIGNATURE EVENT TO RAISE FUNDS AND AWARENESS. WALKS TAKE PLACE IN MORE THAN 50 CITIES ACROSS THE NATION EACH YEAR AND HAVE RAISED OVER $33 MILLION SINCE 2000. ON A NATIONAL LEVEL, THE PKD FOUNDATION EMPOWERS PKD PATIENTS AND CAREGIVERS TO MANAGE PKD WHILE MAINTAINING A HIGH QUALITY OF LIFE. THE FOUNDATION PROVIDES RESOURCES ACROSS THE CONTINUUM OF DISEASE PROGRESSION FOR PATIENTS, CAREGIVERS, PARENTS, ETC. RESOURCES INCLUDE WEBINARS, ENDURING WEBCASTS, VIDEOS, A COMPREHENSIVE WEBSITE (PKDCURE.ORG/EDUCATION), HANDBOOKS AND OTHER PRINT MATERIALS. THE ANNUAL PKD NATIONAL CONFERENCE (PKDCON) IS THE FOUNDATION'S LARGEST EDUCATION EVENT BRINGING TOGETHER THE ENTIRE PKD COMMUNITY INCLUDING, PATIENTS, CAREGIVERS, VOLUNTEERS, RESEARCHERS AND CLINICIANS. 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 DIRECTORS 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 DIRECTORS OF PKD FOUNDATION ARE REQUIRED TO SIGN AN ANNUAL STATEMENT DISCLOSING ANY CONFLICTS OF INTEREST. THE EXECUTIVE 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. EMPLOYEES ARE REQUIRED TO SIGN AN ANNUAL STATEMENT DISCLOSING ANY CONFLICTS OF INTEREST. THESE DOCUMENTS ARE REVIEWED AND CONFLICTS ARE MITIGATED BY THE CEO. FORM 990, PART VI, SECTION B, LINE 15A & 15B ANNUALLY, THE EXECUTIVE COMMITTEE 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 DETERMINES MERIT AND BONUS LEVELS BASED ON THEIR REVIEW. ANNUALLY, THE EXECUTIVE COMMITTEE REVIEWS A NATIONAL NONPROFIT COMPENSATION REPORT FOR COMPARABILITY DATA FOR THE CEO SALARY. AFTER A FULL REVIEW OF PERFORMANCE AND COMPARABILITY DATA, THE EXECUTIVE COMMITTEE VOTES TO APPROVE ANY SALARY INCREASE AND BONUS. 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-2S BY ADP TOTALSOURCE.