2013-11-13T12:35:37-06:00 2012-12-31 232896692 BBD LLP 1835 MARKET STREET 26TH FLOOR PHILADELPHIA PA 19103 990 2012-01-01 383569922 NEPHCURE FOUNDATION NEPH 6105400186 15 WATERLOO AVENUE BERWYN PA 19312 IRVING A SMOKLER 6105400186 2013-11-12 1 MARIANNE MAK P00297744 2155677770 2013-11-04 2012 2016-02-24 21:20:13Z IRVING A SMOKLER 15 WATERLOO AVENUE BERWYN PA 19312 2836431 0 X WWW.NEPHCURE.ORG X 2000 MI SEE PAGE 2, PART III STATEMENT OF PROGRAM SERVICE ACCOMPLISHMENTS, LINE 1. 18 18 0 620 0 0 2348653 2184438 10113 273691 4205 3314 0 0 2362971 2461443 1658609 516000 0 0 0 0 0 0 276714 1205665 1576300 2864274 2092300 -501303 369143 1607780 1484616 2689726 2197419 -1081946 -712803 THE NEPHCURE FOUNDATION IS THE ONLY ORGANIZATION COMMITTED EXCLUSIVELY TO SUPPORT RESEARCH SEEKING THE CAUSE OF THE POTENTIALLY DEBILITATING KIDNEY DISEASE FOCAL SEGMENTAL GLOMERULOSCLEROSIS (FSGS) AND NEPHROTIC SYNDROME, IMPROVE TREATMENT AND FIND A CURE. 0 0 1449416 516000 RESEARCH - THE NEPHCURE FOUNDATION COMMITTED TO MULTI-YEAR GRANTS FOR BASIC, TRANSLATIONAL AND CLINICAL SCIENTIFIC RESEARCH. THE PURPOSE BEING TO DETERMINE CAUSES OF KIDNEY DISEASE, FSGS & NEPHROTIC SYNDROME THAT COULD LEAD TO EFFECTIVE TREATMENTS. (DONATED PROFESSIONAL SERVICES: $180,388) 226759 37754 HEALTH AND EDUCATION - THE NEPHCURE FOUNDATION FUNDS AND MANAGES PROGRAMS TO EDUCATE PATIENT/FAMILIES ABOUT NEPHROTIC SYNDROME & FSGS. THE NEPHCURE FOUNDATION ALSO PROVIDES EDUCATION MATERIALS (BI-LINGUAL) FOR PHYSICIANS AND DIRECTLY TO PATIENT FAMILIES. (DONATED PROFESSIONAL SERVICES: $2,235,281) 56799 ADVOCACY - THE NEPHCURE FOUNDATION WORKS WITH THE NATIONAL INSTITUTES OF HEALTH AND OTHER HEALTH FUNDING ORGANIZATIONS TO ENCOURAGE MORERESEARCH INTO NEPHROTIC SYNDROME & FSGS. 1732974 1 1 0 1 0 1 0 0 0 0 0 0 0 0 0 1 1 0 0 0 1 1 0 0 1 1 0 1 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 1 32 0 0 0 0 0 0 0 1 1 0 0 0 0 0 0 0 X 18 18 1 1 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 0 0 0 AL AK AZ AR CA CO CT FL GA KS KY IL LA ME MD MA MI MN MS MO NH NJ NM NY NC OK OH OR PA RI SC TN UT VA WV WA WI X EXECUTIVE DIRECTOR 6105400186 15 WATERLOO AVENUE BERWYN PA 19312 X IRVING A SMOKLER PHD 7.00 X X 0 0 0 RON COHEN 1.00 X X 0 0 0 CAROL SMOKLER PHD 1.00 X X 0 0 0 MICHAEL LEVINE 15.00 X X 0 0 0 KATHLEEN BRODERICK 5.00 X 0 0 0 CLAIRE CASCIO RN 5.00 X 0 0 0 JIM DUQUETTE 2.00 X 0 0 0 SCOTT GOLDSTEIN 1.00 X 0 0 0 DAVID KERSHAW MD 1.00 X 0 0 0 ELAINE KAMIL MD 1.00 X 0 0 0 SARETTA MCDONOUGH ESQ 2.00 X 0 0 0 JOHN ROY 1.00 X 0 0 0 ANDREW SILVERMAN 1.00 X 0 0 0 WILLIAM SMOYER MD 1.00 X 0 0 0 SONDRA STUBBLEFIELD 1.00 X 0 0 0 JENNIFER GEISSER SIEGEL 1.00 X 0 0 0 CHARLES TURNER 4.00 X 0 0 0 MANU VARMA 1.00 X 0 0 0 HENRY BREHM 72.00 X 0 0 0 0 0 0 0 0 0 0 VIZION GROUP 15 WATERLOO AVENUE BERWYN PA 19312 MGT & OTHER SERVICES 688203 1 1471550 712888 2184438 CONFERENCE REVENUE 900099 235937 57937 178000 PATIENT EDUC SEMINARS 900099 37754 37754 273691 3314 3314 306366 1471550 306366 0 68622 68622 0 2461443 95691 0 181314 453500 453500 62500 62500 536445 424690 31323 80432 27750 27750 57873 55103 2770 136458 134503 1955 58433 17258 39789 1386 15141 12870 757 1514 50544 41500 1507 7537 17526 14856 2670 397374 397374 7549 6039 1510 SPECIAL EVENTS 177512 177512 DISCOUNT ON GRANTS PAY. 42393 42393 PROFESSIONAL SERVICES 22861 20575 2286 GRANT EXPENSES 11623 11623 16818 10440 6378 2092300 1732974 82612 276714 685044 374470 713721 874078 116835 198409 92180 37659 1607780 1484616 91915 70453 2520686 2075325 77125 51641 2689726 2197419 X -1140156 -771013 58210 58210 -1081946 -712803 1607780 1484616 369143 0 X 0 1 X 1 0 X 1632256 2021853 2069743 2358766 2362438 10445056 1632256 2021853 2069743 2358766 2362438 10445056 73993 10371063 30928 19274 6097 4205 3314 63818 249316 132417 181334 270091 374988 1208146 11717020 95691 0.88510 0.90270 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 0 0 0 0 0 1 27750 0 0 27750 0 6 39068 149097 1 1 0 X 5252100 2415669 374988 2790657 2461443 0 2461443 4882957 2415669 374988 2790657 2092300 0 2092300 DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: PART X, LINE 2: UNCERTAIN TAX POSITIONS UNDER ASC 740 GAAP REQUIRES ENTITIES TO EVALUATE, MEASURE, RECOGNIZE AND DISCLOSE ANY UNCERTAIN INCOME TAX POSITIONS TAKEN ON THEIR TAX RETURNS. GAAP PRESCRIBES A MINIMUM RECOGNITION THRESHOLD THAT A TAX POSITION IS REQUIRED TO MEET IN ORDER TO BE RECOGNIZED IN THE FINANCIAL STATEMENTS. THE FOUNDTAION BELIEVES THAT IT HAD NO UNCERTAIN TAX POSITIONS AS DEFINED IN GAAP AND THE STANDARD HAD NO IMPACT ON THE FOUNDATION'S FIANCIAL STATEMENTS. PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS-DIRECT BENEFITS TO DONORS 374,988. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS-DIRECT BENEFITS TO DONORS 374,988. 0 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH 37500 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH 25000 0 0 0 0 0 0 62500 0 62500 UNITED KINGDOM FOR RESEARCH 37500 CHECK CANADA FOR RESEARCH 25000 CHECK 2 0 0 0 0 0 0 PROCEDURE FOR MONITORING GRANTS OUTSIDE THE U.S.: SCHEDULE F, PART I, LINE 2: GRANTS MONITORING PROCEDURES THE FOUNDATION GRANT AWARDS STIPULATE THAT DISBURSEMENT OF FUND IS TIED TO THE RECEIPT OF WRITTEN PROGRESS REPORTS EVERY SIX MONTHS. THE PRINCIPAL INVESTIGATOR MUST NOTE IN THOSE REPORTS IF THERE ARE ANY BUDGET CHANGES THAT DEVIATE FROM THE APPROVED PROJECT BUDGET ABOVE A DEFINED POINT (USUALLY $5,000). ON AN ANNUAL BASIS, THE PRINCIPAL INVESTIGATOR AND HIS/HER INSTITUTION MUST PROVIDE A DETAILED BUDGET REPORT LISTING ACTUAL EXPENDITURES BY BUDGET CATEGORY (E.G. SALARY AND FRINGE, EQUIPMENT, SUPPLIES, TRAVEL). NEPHCURE WALKS 717987 677540 40447 2400 38047 COUNTDOWN TO A CURE 679591 489969 189622 200 129331 60091 3 380338 304041 76297 1306 42000 32991 1777916 1471550 306366 200 3706 171331 131129 306366 0 68622 293 21899 46430 1 0.98000 68622 293 21899 46430 68622 NY 0 THE STATE OF NEW YORK DOES NOT PROVIDE LICENSES FOR CHARITY CASINO EVENTS. 0 1 0 1.00000 EXECUTIVE DIRECTOR OF THE ORGANIZAT 15 WATERLOO AVENUE BERWYN PA 19312 0 0 1 CHILDREN'S HOSPITAL OF BOSTON 300 LONGWOOD AVENUE BOSTON MA 02115 104277444 501(C)(3) 50000 YOUNG INVESTIGATOR CAREER DEVELOPMENT GRANT CHILDERN'S HOSPITAL OF PHILADELPHIA 3401 CIVIC CENTER BLVD PHILADELPHIA PA 19104 231352166 501(C)(3) 50000 NEPHCURE FOUNDATION-ASN RESEARCH GRANT MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT ST BOSTON MA 02114 041564655 501(C)(3) 37500 YOUNG INVESTIGATOR CAREER DEVELOPMENT GRANT SUNY UPSTATE MEDICAL UNIVERSITY 750 E ADAMS STREET SYRACUSE NY 13210 141368631 501(C)(3) 50000 YOUNG INVESTIGATOR CAREER DEVELOPMENT GRANT UNIVERSITY OF MIAMI SCHOOL OF MEDICINE BATCHELOR BUILDING MIAMI FL 33136 590624458 501(C)(3) 100000 YOUNG INVESTIGATOR CAREER DEVELOPMENT GRANT UNIVERSITY OF PENNSLYVANIA 3451 WALNUT STREET PHILADELPHIA PA 19104 231352685 501(C)(3) 25000 POST-DOCTOTRAL FELLOWSHIP GRANT CHILDRENS HOSPITAL OF PITTSBURG - UPMC 1405 SHADY AVENUE PITTSBURGH PA 15217 232935278 501(C)(3) 50000 ESTABLISHED INVESTIGATOR NEW DIRECTION GRANTS UNIVERSITY OF WASHINGTON UW BOX 353010 SEATTLE WA 98195 911486484 501(C)(3) 16000 YOUNG INVESTIGATOR CAREER DEVELOPMENT GRANT RESEARCH INSTITUTE AT NATIONWIDE 700 CHILDRENS DR COLUMBUS OH 43205 311036372 501(C)(3) 75000 NCF RESEARCH GRANT 9 PROCEDURE FOR MONITORING GRANTS IN THE U.S.: PART I, LINE 2: SCHEDULE I, PART I, LINE 2: THE ORGANIZATION MONITORS THE USE OF GRANT FUNDS THROUGH ITS GRANT APPLICATION PROCESS, WHICH REQUESTS A NUMBER OF DEPARTMENT AUTHORIZATIONS THAT ENSURE SUPPORT FOR EACH GRANT RECIPIENT. THE ORGANIZATION ALSO REQUIRES AN INTERIM REPORT FROM EACH GRANT RECIPIENT. UPON APPROVAL OF THE RECIPIENT'S INTERIM REPORT THE REMAINDER OF FUNDING IS DISBURSED. A FINAL REPORT IS ALSO REQUESTED OF THE GRANT RECIPIENT ONCE THE GRANT PERIOD HAS ENDED. VIZION GROUP ENTITY >35% OWNED BY THE EXECUTIVE DIRECTOR 649694 INDEPENDENT CONTRACTOR ARRANGEMENT 0 VIZION GROUP ENTITY >35% OWNED BY THE EXECUTIVE DIRECTOR 9084 OCCUPANCY COSTS 0 FORM 990, PART VI, SECTION A, LINE 2 FAMILY RELATIONSHIP AMONG VOTING MEMBERS IRVING A. SMOKLER, PHD AND CAROL SMOKLER, PHD ARE HUSBAND AND WIFE AND SERVE AS OFFICERS OF THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION A, LINE 3 DELEGATION OF MANAGEMENT DUTIES TO A MANAGEMENT COMPANY FOR EFFICIENCY PURPOSES THE ORGANIZATION CONTRACTS WITH AN INDEPENDENT CHARITY MANAGEMENT SERVICE COMPANY, INCLUDING THE POSITION OF EXECUTIVE DIRECTOR (NON-VOTING MEMBER OF THE BOARD) AND OTHER MANAGEMENT PERSONNEL OF THE ORGANIZATION. THE ORGANIZATION COVERS THE COST OF THE PERSONNEL WITHOUT MARK-UP AND MAY REDUCE THE FEE BY TERMINATING FUNCTIONS. THE ORGANIZATION INCURRED MANAGEMENT FEES AND OTHER PROFESSIONAL SERVICES FOR A TOTAL OF $649,694 FOR THE TAX YEAR ENDING 2012 (INCLUDING $135,000 SALARY TO THE EXECUTIVE DIRECTOR). FORM 990, PART VI, SECTION B, LINE 11 GOVERNING BODY REVIEW OF FORM 990 PRIOR TO ITS FILING, A FINAL COPY OF THE FORM 990 IS DISTRIBUTED TO EACH VOTING MEMBER OF THE GOVERNING BOARD. FORM 990, PART VI, SECTION B, LINE 12C MONITORING AND ENFORCEMENT OF CONFLICTS POLICY THE BOARD REVIEWS COMPLETED QUESTIONNAIRES AND DISCLOSES INFORMATION DURING THE ANNUAL BOARD MEETING FOR BOARD APPROVAL. FORM 990, PART VI, SECTION C, LINE 19 PUBLIC AVAILABILITY OF OTHER DOCUMENTS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENT, AND FORM 990 ARE MADE AVAILABLE TO THE PUBLIC UPON REQUEST.