2024-05-14T08:52:34-05:00 2023-06-30 FORVIS LLP 1201 Walnut Suite 1700 Kansas City MO 641062246 990 2022-07-01 431266906 PKD FOUNDATION % TOM ROSS PKDF 8169312600 1001 E 101ST TER Suite 220 KANSAS CITY MO 64131 SUSAN BUSHNELL PRESIDENT / CEO 8169312600 2024-05-15 true CARMEN GLEASON 999009999 APRIL ARNOLD CPA P01559426 8162216300 2024-05-15 3 2022 2023-04-26 12:10:37Z SUSAN BUSHNELL 1001 E 101ST TER KANSAS CITY MO 64131 19349225 false X WWW.PKDCURE.ORG X 1982 MO PROMOTE PROGRAMS OF RESEARCH AND EDUCATION TO DISCOVER TREATMENTS AND A CURE FOR PKD. 12 11 30 225 0 0 18319682 9493464 0 0 285943 824102 -132677 -33568 18472948 10283998 1898465 2557035 0 0 3325422 3651605 75917 67000 989538 2058513 2799502 7358317 9075142 11114631 1208856 31113409 33103416 620624 662475 30492785 32440941 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 2022 OR 2021. 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 SPECIAL EVENT EXPENSES 132,108 --------- TOTAL $ 132,108 SCHEDULE D, PART XII, LINE 2D SPECIAL EVENT EXPENSES 132,108 --------- TOTAL $ 132,108 true Europe (Including Iceland and Greenland) 0 0 Grantmaking 220000 North America 0 0 Grantmaking 40000 0 0 0 0 260000 260000 Europe (Including Iceland and Greenland) INVESTIGATOR GRANT 80000 WIRE North America INVESTIGATOR GRANT 40000 WIRE Europe (Including Iceland and Greenland) INVESTIGATOR GRANTS 80000 WIRE Europe (Including Iceland and Greenland) FELLOWSHIP 60000 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 VPSE - VOLUNTEE 424626 377992 46634 46634 CMF - WALK/RUN 1468880 1416978 51902 33572 2919 48983 0 1893506 1794970 98536 33572 2919 95617 132108 -33572 true RESEARCH FOUNDATION FOR THE STATE UNIVERSITY OF NY PO BOX 9 ALBANY NY 122010009 141368361 501(C)(3) 80000 INVESTIGATOR GRANT UNIVERSITY OF ARIZONA 1303 E UNIVERSITY BLVD TUCSON AZ 85719 742652689 GOVT 80000 INVESTIGATOR GRANT JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD BALTIMORE MD 21211 520595110 501(C)(3) 80000 INVESTIGATOR GRANT REGENTS OF THE UNIVERSITY OF COLORADO 13001 E 17TH PLACE ROOM W1124 AURORA CO 80045 846000555 GOVT 80000 INVESTIGATOR GRANT UNIVERSITY OF ALABAMA BIRMINGHAM GRANTS 1720 2ND AVE SOUTH AB 990 BIRMINGHAM AL 352940109 636005396 501(C)(3) 140000 INVESTIGATOR GRANT / FELLOWSHIP LOYOLA UNIVERSITY OF CHICAGO 820 N MICHIGAN AVE CHICAGO IL 60611 361408475 501(C)(3) 80000 INVESTIGATOR AWARD UNIVERSITY OF KANSAS MEDICAL CENTER RESEARCH INSTI 3901 RAINBOW BLVD KANSAS CITY KS 66160 481108830 501(C)(3) 220000 INVESTIGATOR GRANT / FELLOWSHIP MICHIGAN TECHNICAL UNIVERSITY 1400 TOWNSEND DR HOUGHTON MI 49931 386005955 GOVT 80000 INVESTIGATOR GRANT YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 200000 INVESTIGATOR GRANT / DRUG REPURPOSING / CARE CENTER GRANT / FELLOWSHIP CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVENUE CINNCINNATI OH 45229 310833936 501(C)(3) 80000 INVESTIGATOR GRANT CLEVELAND CLINIC FOUNDATION PO BOX 931531 CLEVELAND OH 44193 340714585 501(C)(3) 80000 INVESTIGATOR GRANT MEDICAL COLLEGE OF WISCONSIN 8701 WATERTOWN PLANK RD MILWAUKEE WI 53226 390806261 501(C)(3) 80000 INVESTIGATOR GRANT MAYO CLINIC 200 FIRST ST SW ROCHESTER MN 55905 416011702 501(C)(3) 120000 YOUNG INVESTIGATOR GRANT / CORE GRANT ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI ONE GUSTAVE L LEVY P1 NEW YORK NY 10029 136171197 501(C)(3) 80000 YOUNG INVESTIGATOR GRANT MAYO CLINIC JACKSONVILLE 4500 SAN PABLO ROAD JACKSONVILLE FL 32224 593337028 501(C)(3) 71000 COMMUNITY ENGAGEMENT GRANT/ CARE CENTER GRANT REGENTS OF THE UNIV OF CALI - UC SAN DIEGO 9500 GILMAN DR LA JOLLA CA 92093 956006144 501(C)(3) 6000 COMMUNITY ENGAGEMENT GRANT MEDICAL UNIVERSITY OF SOUTH CAROLINA 1 SOUTH PARK CIRCLE CHARLESTON SC 29407 576000722 GOVT 6000 COMMUNITY ENGAGEMENT GRANT BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SY 21 N PARK ST MADISON WI 53715 396006492 501(C)(3) 60000 CARE CENTER GRANT KANSAS UNIVERSITY ENDOWMENT ASSOCIATION PO BOX 928 LAWRENCE KS 66044 480547734 501(C)(3) 60000 CARE CENTER GRANT UNIVERSITY OF MARYLAND BALTIMORE 220 N ARCH ST BALTIMORE MD 21201 526002033 501(C)(3) 60000 CARE CENTER GRANT SWEDISH MEDICAL CENTER FOUNDATION 747 BROADWAY SEATTLE WA 98122 910983214 501(C)(3) 67000 CARE CENTER GRANT THE ROGOSIN INSTITUTE 504 E 74TH STREET NEW YORK NY 10021 133184198 501(C)(3) 28000 CARE CENTER GRANT BOARD OF REGENTS OF THE UNIVERSITY OF OK HEALTH SC PO BOX 26901 OKLAHOMA CITY OK 73126 731563627 501(C)(3) 60000 FELLOWSHIP 23 0 COMMUNITY ENGAGEMENT GRANT 3 10549 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 true 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 CARMEN GLEASON CHIEF OPERATIONS OFFICER 153106 0 16000 0 126 0 20308 0 28848 0 218388 0 0 0 JONATHAN RICH CHIEF DEVELOPMENT OFFICER 139625 0 0 0 419 0 16805 0 14089 0 170938 0 0 0 ANDREW BETTS CHIEF EXECUTIVE OFFICER 187310 0 25500 0 88499 0 36157 0 23713 0 361179 0 0 0 CHRISTOPHER RUSCONI CHIEF RESEARCH OFFICER 194187 0 19380 0 703 0 25712 0 28848 0 268830 0 0 0 SCHEDULE J, PART I, LINE 4A THE FOLLOWING SEVERANCE PAYMENTS WERE MADE DURING THE YEAR: ANDREW BETTS $ 88,333 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 2022 TO COVER A PERCENTAGE OF HIS COMPENSATION. X 20 39900 FAIR MARKET VALUE X 16 433551 FAIR MARKET VALUE 1 false true true SCHEDULE M, PART I, LINE 1B 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. The CEO uses outside research and input from search firms to determine the compensation of other officers. 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.