2022-02-07T15:05:14-06:00 2021-06-30 BKD LLP 1201 Walnut Suite 1700 KANSAS CITY MO 641062246 990 2020-07-01 431266906 PKD FOUNDATION % STEPHANIE BRENDEL PKDF 8169312600 1001 E 101ST TER Suite 220 KANSAS CITY MO 64131 CARMEN GLEASON COO 8169312600 2022-02-15 true CARMEN GLEASON 999009999 April Arnold CPA P01559426 8162216300 3 2020 2022-09-23 18:48:47Z ANDY BETTS 1001 E 101ST TER KANSAS CITY MO 64131 9480520 false X WWW.PKDCURE.ORG X 1982 MO PROMOTE PROGRAMS OF RESEARCH AND EDUCATION TO DISCOVER TREATMENTS AND A CURE FOR PKD. 16 15 48 426 0 0 15841230 7628307 0 0 281624 1194688 1595 131726 16124449 8954721 1565964 1789504 0 0 3094016 3112256 324724 59295 972752 2257239 1853581 7241943 6814636 8882506 2140085 20909832 25693539 3109449 3143870 17800383 22549669 X WE GIVE HOPE. WE FUND RESEARCH, ADVOCATE FOR PATIENTS, AND BUILD A COMMUNITY FOR ALL IMPACTED BY PKD. false false 2352089 1789504 0 RESEARCH - SEE SCHEDULE O 1244436 0 0 AWARENESS AND ADVOCACY - SEE SCHEDULE O 1412766 0 0 EDUCATION AND SUPPORT - SEE SCHEDULE O 5009291 true true false true false false false false false true true false false false true false true false false false true true false true true false false true true true false false false false false false false false true false false false false false false false false true 21 0 48 true false false false false false true true false false false false false false X 16 15 false false true false false false false true true false true true true true true true true true true true false AL AK AZ AR CA CO CT FL GA HI IL KS KY ME MD MA MI MN MS NV NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI X X STEPHANIE BRENDEL 8169312600 1001 E 101ST TER NO 220 KANSAS CITY MO 64131 X ANDREW BETTS PRESIDENT AND CEO 40.0 0.0 X 254500 0 59768 CHRIS RUSCONI CHIEF RESEARCH OFFICER 40.0 0.0 X 202722 0 53607 AMANDA HANOVA CHIEF OPERATIONS OFFICER 40.0 0.0 X 194723 0 39465 SUSAN DEREMER DIRECTOR OF LEADERSHIP GIFTS 40.0 0.0 X 113579 0 11204 CHAD ISEMAN CHIEF ADVANCMENT OFFICER 40.0 0.0 X 99226 0 19864 MICHAL MRUG DIRECTOR 1.0 0.0 X 76445 0 0 BILL BRAZELL DIRECTOR 1.0 0.0 X 0 0 0 ASHLEY BROWN DIRECTOR 1.0 0.0 X 0 0 0 KATHERINE DELL DIRECTOR 1.0 0.0 X 0 0 0 MICHELE KARL DIRECTOR 1.0 0.0 X 0 0 0 ANDREA KRINGSTEIN DIRECTOR 1.0 0.0 X 0 0 0 NAVIN MANGLANI SECRETARY 1.0 0.0 X X 0 0 0 CRAIG RAMSEYER DIRECTOR 1.0 0.0 X 0 0 0 JERRY WAXMAN DIRECTOR 1.0 0.0 X 0 0 0 CHRIS WESS TREASURER 1.0 0.0 X X 0 0 0 PAULA HUTCHINSON DIRECTOR 1.0 0.0 X 0 0 0 ROB ROTH VICE CHAIR 1.0 0.0 X X 0 0 0 DR BEVERLY BENSON CHAIR 2.0 0.0 X X 0 0 0 STU CAPLAN DIRECTOR 1.0 0.0 X 0 0 0 JULIE MARSHALL DIRECTOR 1.0 0.0 X 0 0 0 AMY OMENN DIRECTOR 1.0 0.0 X 0 0 0 KIM WALTER DIRECTOR 1.0 0.0 X 0 0 0 941195 0 183908 4 false true true 0 1812283 400319 5415705 278960 7628307 0 512170 512170 0 0 0 0 0 1170406 487888 682518 682518 682518 108187 1812283 37911 70276 70276 0 0 0 0 0 0 MISCELLANEOUS INCOME 900099 61450 61450 61450 8954721 1326414 1539504 1539504 50000 50000 200000 200000 0 799398 533384 146066 119948 0 1505668 960298 272765 272605 184795 119747 33577 31471 413417 267894 75118 70405 208978 135418 37971 35589 0 144695 93762 26291 24642 32938 21344 5985 5609 130234 130234 59295 59295 0 249579 161728 45348 42503 362897 177282 49710 135905 141163 91474 25649 24040 200436 129883 36419 34134 0 261075 169177 47437 44461 7858 5092 1428 1338 0 13373 8666 2430 2277 5201 3370 945 886 0 217322 183649 11799 21874 21134 10260 4841 6033 DUES & SUBSCRIPTIONS 46069 4419 5252 36398 BAD DEBT EXPENSE 9853 6385 1790 1678 _ 0 _ 0 9754 6321 1772 1661 6814636 5009291 832593 972752 X 837660 1842740 2329780 2174666 1975570 1256047 53985 78387 0 0 0 0 0 0 0 0 246080 274717 967824 489968 682339 477856 14768885 18716498 0 0 0 0 0 0 15533 872628 20909832 25693539 870271 316820 400000 300000 1441378 1802605 0 0 0 0 0 0 0 0 397800 483385 0 241060 3109449 3143870 X 4630854 6262905 13169529 16286764 17800383 22549669 20909832 25693539 2140085 2609201 X false true X true false X 5709118 12652147 6507595 15841230 7628307 48338397 0 0 5709118 12652147 6507595 15841230 7628307 48338397 10897790 37440607 73444 100878 145688 335777 512170 1167957 0 39617 130100 35413 0 61450 266580 49772934 16248 0.75223 0.76739 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 130234 130234 6684402 6814636 490732 122683 false 536097 558498 512097 490732 2097424 3146136 60000 55000 60000 130234 305234 134024 139625 128024 122683 524356 786534 14598334 569425 3894361 90031 18972089 4597077 9642300 399614 40657 14598334 4079744 409814 276814 148064 21231 4597077 2960433 1021831 222220 108000 16740 4079744 2773007 310566 108000 15140 2960433 0.25300 0.05270 0.69430 false false 69356 24522 44834 898468 465446 433022 477856 0 CAPITAL LEASE LIABILITY 241060 241060 12078443 2609201 476610 37911 3123722 8954721 8954721 7329157 476610 37911 514521 6814636 6814636 SCHEDULE D, PART V, LINE 4 THE ENDOWMENT IS INTENDED TO FUND RESEARCH PROJECTS IN SUPPORT OF OUR VISION TO END PKD. 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 2020 OR 2019. 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 EXPENSE $37,911 SCHEDULE D, PART XII, LINE 2D SPECIAL EVENT EXPENSE $37,911 true Europe (Including Iceland and Greenland) Grantmaking 160000 East Asia and the Pacific Grantmaking 40000 200000 200000 Europe (Including Iceland and Greenland) ADPKD RESTRICTED FEEDING IN ADPKD 80000 WIRE Europe (Including Iceland and Greenland) ADPKD 80000 WIRE East Asia and the Pacific ADPKD 40000 WIRE 3 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. X X X X X true NEWPORT ONE 21 RAILROAD AVE DUXBURY MA 02332 DIRECT MAIL false 328299 224899 103400 328299 224899 103400 AL AK AZ AR CA CO CT FL GA HI IL KS KY ME MD MA MI MN MS NV NH NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI WALK FOR PKD 1109377 1037190 72187 7595 16128 GOLF TOURNAMENT 106520 70520 36000 4445 9743 1 704573 704573 1920470 1812283 108187 7595 4445 25871 37911 70276 PART I, LINE 2B, COLUMN (V) PAID PROFESSIONAL FUNDRAISER TO CREATE, PRINT AND SEND DIRECT MAIL CONTRIBUTION SOLICITATIONS. PAYMENTS WERE MADE BY CHECK. true UNIVERSITY OF DENVER PO BOX 910439 DENVER CO 80921 846000555 501(C)(3) 80000 ADPKD RESEARCH THERAPEUTIC TARGET IN ADPKD UNIVERSITY OF KANSAS MEDICAL SCHOOL 3901 RAINBOW BLVD 6001 WHE KANSAS CITY KS 66160 481124839 501(C)(3) 240000 ADPKD RESEARCH TOPOLOGY, SPECIFIC PROPERTIES, AND MAYO CLINIC PO BOX 860334 MINNEAPOLIS MN 55486 416011702 501(C)(3) 160000 BIOMARKERS IN ADPKD INACTIVATION OF XBP1 AS A NOVEL STRATEGY TO TREAT YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 065081873 060646973 501(C)(3) 80000 ADPKD RESEARCH THE CRISP COHORT OF ADPKD PATIENTS EMORY UNIVERSITY 1670 CLAIRMONT RD 151F DECATUR GA 30033 580566256 501(C)(3) 80000 CRISP COHORT OF ADPKD PATIENTS ADPKD BASED ON DYNAMIC CHANGES IN UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVE SOUTH LHBR 621 BIRMINGHAM AL 35294 636005396 501(C)(3) 80000 IMAGING BIOMARKERS OF ADPKD KIDNEY DISEASE UNIVERSITY OF TX SOUTHWESTERN MEDICAL CENTER 512 RATION PASS IRVING TX 75063 756002868 501(C)(3) 80000 CHOLESTEROL BIIOSYNTHESIS IN PKD UNIV OF COLORADO DENVER PO BOX 91038 DENVER CO 80291 846000555 GOVT 160000 INVESTIGATING A NEW REGULATOR OF CYST DEVELOPMENT IN PKD UNIV OF OKLAHOMA HEALTH SCIENCES CENTER PO BOX 26901 OKLAHOMA CITY OK 73126 731563627 GOVT 80000 CYST GROWTH CHILDRENS HOSPITAL OF PHILADELPHIA RESEARCH LOCKBOX 1457 PO BOX 8500 PHILADELPHIA PA 19178 231352166 501(C)(3) 80000 ARPKD 10 KAPLAN PRIZES 1 50000 SCHEDULE I, PART I, LINE 2 ALL GRANTEES ARE REQUIRED TO SUBMIT AN ANNUAL RESEARCH PROGRESS REPORT AND AN ANNUAL INSTITUTIONAL FIANANCIAL REPORT. X X X X false false false false false false false false false ANDREW BETTS PRESIDENT AND CEO 236828 0 17672 0 0 0 24967 0 34801 0 314268 0 MICHAL MRUG DIRECTOR 76445 0 0 0 0 0 0 0 0 0 76445 0 CHRIS RUSCONI CHIEF RESEARCH OFFICER 189264 0 13458 0 0 0 19329 0 34278 0 256329 0 AMANDA HANOVA CHIEF OPERATIONS OFFICER 157913 0 36810 0 0 0 15005 0 24460 0 234188 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 2020 TO COVER A PERCENTAGE OF HIS COMPENSATION. X 15 278960 FAIR VALUE false true true 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 A, LINE 4 SIGNIFICANT CHANGES TO THE ORGANIZATION'S BYLAWS WERE MADE DURING THE YEAR, INCLUDING REDUCING NUMBER OF COMMITTEES AND CLARIFYING ROLES OF COMMITTEES AND PANELS. 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-2'S BY ADP TOTALSOURCE. FORM 990, PART XII, LINE 2C THE ORGANIZATION HAS NOT CHANGED ITS OVERSIGHT PROCESS BUT DID CHANGE AUDIT FIRMS.