2013-11-20T10:00:56-06:00 2013-06-30 410746749 CLIFTONLARSONALLEN LLP 2301 VILLAGE DRIVE ST JOSEPH MO 64506 990 2012-07-01 431266906 PKD FOUNDATION PKDF 8169312600 8330 WARD PARKWAY NO 510 KANSAS CITY MO 641142000 RAY SMITH 8169312600 2013-11-20 1 CARL L BIRDSELL CPA P00852768 8162328441 2012 2015-11-30 17:44:51Z GARY GODSEY 8330 WARD PARKWAY NO 510 KANSAS CITY MO 641142000 9466717 0 X WWW.PKDCURE.ORG X 1982 MO PROMOTE PROGRAMS OF RESEARCH AND EDUCATION TO DISCOVER TREATMENTS AND A CURE FOR PKD. 15 15 58 2026 0 0 6838360 8994590 223000 39300 295 -6808 6480 -21537 7068135 9005545 1425167 877016 0 0 2547869 2790159 5417 52327 763766 2952654 2702304 6931107 6421806 137028 2583739 2409330 4726619 598488 332038 1810842 4394581 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 2219337 877016 RESEARCH - SINCE ITS FOUNDING IN 1982, THE PKD FOUNDATION HAS INVESTED MORE THAN $31 MILLION IN RESEARCH, CLINICAL AND SCIENTIFIC GRANTS, AS WELL AS FELLOWSHIPS AND SCIENTIFIC MEETINGS, MAKING US THE SECOND LARGEST FUNDER OF POLYCYSTIC KIDNEY DISEASE (PKD) RESEARCH AFTER THE NATIONAL INSTITUTES OF HEALTH (NIH). THIS HAS LED TO NEW DISCOVERIES ABOUT PKD, INCLUDING IDENTIFYING THE GENES RESPONSIBLE FOR PKD, WHICH ENABLES RESEARCHERS TO INVESTIGATE POSSIBLE TREATMENTS. IN 2010, THE PKD FOUNDATION LAUNCHED THE ACCELERATING TREATMENTS TO PATIENTS (ATP) INITIATIVE, A COMPREHENSIVE, INTEGRATED RESEARCH AND DEVELOPMENT PROGRAM THAT REPRESENTS THE CORE OF OUR WORK. ATP AIMS TO SPEED UP DEVELOPMENT OF TREATMENTS WHICH COULD SLOW OR STOP THE PROGRESSION OF PKD. EACH OF THE PROGRAMS WITHIN ATP IS IMPORTANT AND INTERCONNECTED. THE FOUNDATION'S FISCAL YEAR INVESTMENTS IN ATP ARE OUTLINED BELOW.DRUG REPURPOSING: INVESTED $600,000 TO FOSTER DISCOVERY AND DEVELOPMENT OF NEW TREATMENTS FOR PKD AND TO BUILD A ROBUST CLINICAL TRIAL PIPELINE IN THE MOST COST-EFFECTIVE, LEAST RISKY AND EXPEDIENT WAY. FOUR DRUG CANDIDATES WERE UNDER EVALUATION DURING THE FISCAL YEAR. PKD OUTCOMES CONSORTIUM PROJECT (PKDOC): INVESTED $698,000 TO FACILITATE CLINICAL TRIAL DEVELOPMENT FOR PKD TREATMENTS BY ESTABLISHING BIOMARKERS TO MEASURE EARLY DISEASE PROGRESSION. CORE RESEARCH GRANTS: INVESTED $180,000 IN GRANT FUNDING TO GIVE PKD SCIENTISTS ACCESS TO RESEARCH SERVICES AT EITHER NO COST OR A GREATLY DISCOUNTED COST.SCIENTIFIC MEETINGS: INVESTED $7,000 TO FUND PKD-RELEVANT SCIENTIFIC AND CLINICAL MEETINGS THAT BRING TOGETHER PKD SCIENTISTS FROM AROUND THE WORLD TO DISCUSS CURRENT FINDINGS AND AID RESEARCH COLLABORATION.TISSUE DONATION PROGRAM: INVESTED $10,000 TO COORDINATE DONATION OF DISCARDED HUMAN PKD KIDNEYS TO RESEARCH LABS AROUND THE COUNTRY. TISSUE DONATION IS HIGHLY VALUABLE TO ASSIST RESEARCHERS IN LEARNING ABOUT HOW PKD PROGRESSES THROUGH THE KIDNEYS.CLINICAL TRIAL AWARENESS PROGRAM (CTAP): INVESTED $25,000 TO EDUCATE PATIENTS ABOUT STUDIES THAT ARE CURRENTLY ENROLLING PATIENTS SO THEY CAN MAKE EDUCATED DECISIONS ABOUT PARTICIPATING IN CLINICAL TRIALS. 1338759 16526 AWARENESS AND ADVOCACY - THE FOUNDATION RAISES AWARENESS THROUGH MARKETING AND PUBLIC RELATIONS SO PEOPLE CAN UNDERSTAND PKD, THE FOUNDATION'S SERVICES, AND HOW TO SUPPORT OUR MISSION. THE FOUNDATION EDUCATES THE PKD COMMUNITY THROUGH A FREE MAGAZINE (PKD PROGRESS), A FREE MONTHLY ELECTRONIC NEWSLETTER, EMAILS, WEBINARS, VIDEOS, SOCIAL MEDIA, THE WEBSITES PKDCURE.ORG, KIDNEYLINK.ORG, WALKFORPKD.ORG, AND THE BLOGS PKDHEALTHNOTES.ORG AND PKDWILLNOTBEATME.COM.THIS YEAR, 1,321 FREE INFORMATION PACKET REQUESTS WERE FULFILLED FOR THOSE JUST DIAGNOSED OR LOOKING TO LEARN MORE ABOUT PKD. TOTAL SOCIAL MEDIA FOLLOWERS (FACEBOOK, TWITTER, YOUTUBE) INCREASED BY 4,890 TO REACH 16,150. THE ELECTRONIC NEWSLETTER RECEIVED 72,115 OPENS, OUR WEBSITES RECEIVED 517,175 VISITS AND OUR BLOGS RECEIVED 62,383 VISITS. AWARENESS IS ALSO GENERATED THROUGH PLAYING A KEY ROLE IN LEGISLATIVE ADVOCACY TO SUPPORT PKD-RELATED INITIATIVES. UNITED ON THE HILL, A LEGISLATIVE AND POLICY CONFERENCE IN WASHINGTON D.C., ALLOWS ADVOCATES TO MEET WITH MEMBERS OF CONGRESS TO RAISE MEMBERS' AWARENESS OF PKD AND DISCUSS LEGISLATIVE PRIORITIES. IN 2013, 55 ADVOCATES ATTENDED UNITED ON THE HILL, REPRESENTING 18 STATES, AND CONDUCTED 65 MEETINGS WITH MEMBERS OF CONGRESS. 1187955 EDUCATION AND SUPPORT -THE FOUNDATION PROVIDES EDUCATION AND SUPPORT SERVICES TO LOCAL COMMUNITIES THROUGH ITS 60 VOLUNTEER-RUN CHAPTERS ACROSS THE COUNTRY. OUR CHAPTER VOLUNTEERS BRING TO LIFE THE MISSION OF THE ORGANIZATION BY ENSURING THAT NO ONE FACES PKD ALONE. EDUCATION MEETINGS PROVIDE VALUABLE INFORMATION FROM HEALTH CARE PROFESSIONALS, WHILE SUPPORT ACTIVITIES RANGE FROM LENDING A LISTENING EAR TO ORGANIZED GROUP OUTINGS. THIS YEAR ALONE, OUR CHAPTERS HELD 116 EDUCATION AND SUPPORT EVENTS. CHAPTERS RAISE FUNDS FOR THE FOUNDATION THROUGH EVENTS WHICH ALSO INCREASE AWARENESS OF PKD AND CONNECT LOCAL PATIENTS AND FAMILIES TO EACH OTHER. SIXTY-FIVE CHAPTER FUNDRAISING AND THIRD PARTY EVENTS WERE HELD THIS YEAR. CHAPTERS ALSO RAISE AWARENESS AND MONEY THROUGH THE WALK FOR PKD, THE FOUNDATION'S SIGNATURE FUNDRAISING AND PUBLIC AWARENESS EVENT. THE WALK FOR PKD TAKES PLACE IN MORE THAN 50 CITIES ACROSS THE NATION EACH YEAR AND HAS RAISED MORE THAN $20 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. LAST YEAR THREE WEBINARS WERE ATTENDED BY 660 PEOPLE, AND A NATIONAL VIRTUAL CONFERENCE WAS ATTENDED BY MORE THAN 300 PEOPLE. IN 2013, THE FOUNDATION SPONSORED THE FIRST NATIONAL CONFERENCE FOR PARENTS AND CAREGIVERS OF CHILDREN LIVING WITH PKD AND OTHER CYSTIC DISEASES. 4746051 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 1 0 1 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 13 0 58 1 0 0 0 0 0 1 1 0 0 0 0 X 15 15 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AK AL AR CA CO CT FL GA HI IL KS KY MA MD ME MI MN MS NC ND NH NJ NM NY OH OK OR PA RI SC TN UT VA WA WI WV X X X RAY SMITH 8169312600 8330 WARD PARKWAY STE 510 KANSAS CITY MO 64114 BENNETT ROBERT 1.00 X 0 0 0 BRAZELL BILL 1.00 X 0 0 0 COWLEY BEN MD 1.00 X 0 0 0 GUAY-WOODFORD DR LISA 1.00 X 0 0 0 HAGGARD MICHAEL 1.00 X 0 0 0 HAZELWOOD BLAISE 1.00 X 0 0 0 HUNT WALTER PHD 1.00 X 0 0 0 LIENHARD JEROME T II 1.00 X 0 0 0 MCCALL JOHN 1.00 X 0 0 0 NELSON RICHARD R 1.00 X 0 0 0 ROBERTS JULIA 1.00 X 0 0 0 RYAN ANNE 1.00 X 0 0 0 WOLFE HILARY 1.00 X 0 0 0 GOODMAN SCOTT 2.00 X X 0 0 0 CONDELLA FRANK 2.00 X X 0 0 0 PARKER STEPHANIE 1.00 X X 0 0 0 GODSEY GARY 40.00 X 246573 0 37788 SMITH RAY 40.00 X 108767 0 27868 PANETTA JILL PHD THRU 219 40.00 X 163632 0 26223 LARSON DAN 0.00 X 213683 0 11553 732655 0 103432 4 1 1 0 PRECLINOMICS PO BOX 68845 INDIANAPOLIS IN 46268 DRUG REPURPOSING EVALUATION 1140793 1 X 8994590 546336 8994590 CLINICAL AWARENESS 900099 39300 39300 39300 1638 1638 429237 429324 8359 -87 -8359 -8446 -8446 715 23489 -22774 -22774 MISCELLANEOUS INCOME 900099 1237 1237 1237 9005545 16526 0 -5571 777016 777016 50000 50000 50000 50000 599991 278745 187059 134187 1609345 1026190 316334 266821 79392 51225 17351 10816 344385 206524 85872 51989 157046 92960 36737 27349 11812 4852 6960 26000 26000 52327 52327 418739 371804 7973 38962 318506 318506 184513 106029 31472 47012 51642 49100 2542 275129 163862 61420 49847 181416 112599 17857 50960 254670 252330 196 2144 45923 40142 2195 3586 13236 9137 2263 1836 EXTERNAL RESEARCH 819900 819900 BANK & CREDIT CARD FEES 64883 64883 DUES, FEES, MEMBERSHIPS 35935 14230 5277 16428 6421806 4746051 911989 763766 X 730066 293566 0 436500 92103 191785 1421974 3015079 611179 1356882 28823 56175 23489 127581 54753 271844 243138 49070 28706 55111 23239 2409330 4726619 504343 309743 94145 22295 598488 332038 X 534739 3274728 1276103 1119853 1810842 4394581 2409330 4726619 2583739 0 X X 0 1 X 1 0 X 6933636 8359686 7528329 6838361 9195589 38855601 6933636 8359686 7528329 6838361 9195589 38855601 2973294 35882307 4735 365 228 330 1638 7296 65914 41751 639 51 1237 109592 38972489 321868 0.92070 0.92490 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 29376 29376 6635154 6664530 483227 120807 0 0 271844 243138 28706 28706 X 9247810 218776 23489 242265 9005545 0 9005545 6664071 218776 23489 242265 6421806 0 6421806 DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: PART X, LINE 2: THE ORGANIZATION CONSIDERED UNCERTAIN TAX POSITIONS UNDER FIN 48 (ASC 740) AND DETERMINED THAT NO LIABILITY FOR UNCERTAIN TAX POSITIONS SHOULD BE RECORDED AS OF JUNE 30, 2013. THEREFORE, THERE IS NO FOOTNOTE REGARDING SUCH LIABILITY IN THE ORGANIZATION'S FINANCIAL STATEMENTS. PART XI, LINE 2D - OTHER ADJUSTMENTS: COST OF GOODS SOLD 23,489. PART XII, LINE 2D - OTHER ADJUSTMENTS: COST OF GOODS SOLD 23,489. 1 THE NETHERLANDS 0 0 GRANTS TO RECIPIENTS LOCATED IN THE REGION N/A 50000 0 0 0 0 0 0 50000 0 50000 LILLIAN JEAN KAPLAN INTERNATIONAL PRIZE FOR PKD RESEARCH THE NETHERLANDS 1 50000 ACH TRANSFER 0 0 0 0 0 0 METHOD USED TO ACCCOUNT FOR EXPENDITURES: SCHEDULE F, PART I, LINE 3: THE LILLIAN JEAN KAPLAN INTERNATIONAL PRIZES FOR PKD RESEARCH ARE AWARDED FOLLOWING AN EXTENSIVE NOMINATION AND SELECTION PROCESS. THE NATURE OF THE SELECTION PROCESS IS TO DETERMINE QUALIFIED AND WORTHY NOMINEES; THEREFORE, THE AWARDS ARE BASED UPON THE SELECTION PROCESS AND NOT SUBSEQUENT ACTIVITY. THERE IS NO ADDITIONAL MONITORING FOLLOWING THE PRESENTATION OF THE AWARDS. X X X X X X 1 GONSERGERBER LLP 1776 LEGACY CIRCLE STE 100 NAPERVILLE IL 60563 DEVELOPMENT PLANNING AND PROSPECT MANAGEMENT 0 2743600 39000 2704600 MERRIGAN & CO 1012 EAST 55TH STREET KANSAS CITY MO 64110 DATA AUDIT AND DIRECT MAIL CONSULTING 0 351553 9967 341586 3095153 48967 3046186 AK AL AR CA CO CT FL GA HI IL KS KY MA MD ME MI MN MS NC ND NH NJ NM NY OH OK OR PA RI SC TN UT VA WA WI WV 1 MAYO CLINIC COLLEGE OF MEDICINE 200 FIRST ST SW PLUMMER 5 ROCHESTER MN 55905 416011702 501(C)(3) 94224 CASH GRANT FOR RESEARCH - VARIOUS PROJECTS INCLUDING DATA EVALUATION RESEARCH PROJECT INDIANA UNIVERSITY SCHOOL OF MEDICINE 635 BARNHILL DR INDIANAPOLIS IN 46202 356001673 501(C)(3) 40000 CASH GRANT FOR RESEARCH CRITICAL PATH INSTITUTE 1730 E RIVER ROAD SUITE 200 TUCSON AZ 85718 201991334 501(C)(3) 194010 CASH PAYMENTS FOR DATA EVALUATION RESEARCH PROJECT EMORY UNIVERSITY 1599 CLIFTON ROAD NE ATLANTA GA 30322 580566256 501(C)(3) 155354 CASH PAYMENTS FOR DATA EVALUATION RESEARCH PROJECT TUFTS MEDICAL CENTER PHYSICIANS ORGANIZATION INC 750 WASHINGTON ST BOSTON MA 02111 042743894 501(C)(3) 100758 CASH PAYMENTS FOR DATA EVALUATION RESEARCH PROJECT UNIVERSITY OF COLORADO DEPARTMENT 238 DENVER CO 809210238 846000555 501(C)(3) 85532 CASH PAYMENTS FOR DATA EVALUATION RESEARCH PROJECTS KUMC RESEARCH INSTITUTE 3901 RAINBOW BLVD KANSAS CITY KS 66160 481108830 501(C)(3) 100000 CASH GRANT FOR RESEARCH 7 LILLIAN JEAN KAPLAN AWARD FOR PKD RESEARCH 1 50000 PROCEDURE FOR MONITORING GRANTS IN THE U.S.: PART I, LINE 2: SCHEDULE I, 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. 990 SCHEDULE I, PART III LILLIAN JEAN KAPLAN AWARD THE LILLIAN JEAN KAPLAN INTERNATIONAL PRIZES FOR PKD RESEARCH ARE AWARDED FOLLOWING AN EXTENSIVE NOMINATION AND SELECTION PROCESS. THE NATURE OF THE SELECTION PROCESS IS TO DETERMINE QUALIFIED AND WORTHY NOMINEES; THEREFORE, THE AWARDS ARE BASED UPON THE SELECTION PROCESS AND NOT SUBSEQUENT ACTIVITY. THERE IS NO ADDITIONAL MONITORING FOLLOWING THE PRESENTATION OF THE AWARDS. X X 1 0 0 0 0 0 0 0 0 GODSEY GARY 246573 0 0 0 0 0 11719 0 26069 0 284361 0 0 0 PANETTA JILL PHD THRU 219 163632 0 0 0 0 0 12210 0 14013 0 189855 0 0 0 LARSON DAN 0 0 0 0 213683 0 0 0 11553 0 225236 0 0 0 PART I, LINE 4A DAN LARSON RECEIVED SEVERANCE OF $168,683 AND $45,000 FOR CONSULTING SERVICES. X 40 240962 FAIR VALUE X RAFFLE ITEMS 280 153802 FAIR VALUE X ADV/TECH 7 103428 FAIR VALUE X TRAVEL 23 31768 FAIR VALUE X CONFERENCE ITEMS 13 838 FAIR VALUE X EVENT ITEMS 20 8015 FAIR VALUE X FOOD & BEVERAGES 54 7524 FAIR VALUE 0 1 1 THIRD PARTY USE: PART I, LINE 32B: ORGANIZATION UTILIZES ONGOING BANKING RELATIONSHIPS TO MARKET DONATED SECURITIES. FORM 990, PART VI, SECTION B, LINE 11 PRIOR TO FILING THE 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. 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. FORM 990, PART VI, SECTION B, LINE 15 THE ORGANIZATION PARTICIPATES IN AN ANNUAL COMPENSATION SURVEY OF NATIONAL NOT-FOR-PROFIT ORGANIZATIONS. THE EXECUTIVE COMMITTEE OF THE BOARD OF TRUSTEES AND CEO COMPARE SALARIES OF THE ORGANIZATION'S OFFICERS TO SIMILAR POSITIONS AT SIMILAR SIZE ORGANIZATIONS TO ENSURE THAT SALARIES ARE WITHIN APPROPRIATE RANGES. ALL COMPENSATION CHANGES ARE APPROVED IN WRITING AND THE WRITTEN RECORD IS MAINTAINED IN EACH OFFICER'S PERSONNEL FILE. 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. LOSS ON SALES OF INVENTORY FORM 990, PART VIII, LINE 10C AT THE END OF THE CURRENT FISCAL YEAR, INENTORIES WERE WRITTEN OFF DUE TO WORTHLESSNESS AND LACK OF SALES. THIS CREATED A SIGNIFICANT LOSS ON FORM 990, SCHEDULE VIII, LINE 10C. AUDIT RESPONSIBILITY AND SELECTION OF AN INDEPENDENT ACCOUNTANT: FORM 990, PART XII, LINE 2C: THE ORGANIZATION HAS A COMMITTEE THAT ASSUMES RESPONSIBILITY FOR THE AUDIT AND SELECTION OF AN INDEPENDENT ACCOUNTANT. THERE HAS BEEN NO CHANGE IN THIS PROCESS FROM THE PRIOR YEAR. COMPENSATION: FORM 990, PART VII, SEC. A: PKD FOUNDATION CONTRACTS WITH INSPERITY TO PROVIDE CERTAIN EMPLOYEE BENEFITS AND PAYROLL SERVICES. EMPLOYEES ARE CONSIDERED TO BE JOINTLY EMPLOYED BY BOTH PKD FOUNDATION AND INSPERITY. IN ORDER TO COMPLY WITH TRANSPARENCY DIRECTIVES AS A PART OF THE REFORMATTED 990, THE FOUNDATION HAS DECIDED TO REPORT COMPENSATION IN PART VII TO INCLUDE AMOUNTS PAID AND REPORTED ON W-2'S BY INSPERITY.