2014-05-20T08:54:25-05:00 2013-12-31 050409384 KAHN LITWIN RENZA & CO LTD 800 SOUTH STREET SUITE 300 WALTHAM MA 02453 990 2013-01-01 206745475 THE ADENOID CYSTIC CARCINOMA RESEARCH FOUNDATION ADEN 7812489699 PO BOX 442 NEEDHAM MA 02494 JEFFREY A KAUFMAN EXECUTIVE DIRECTOR 7812489699 2014-05-20 1 DEBORAH A HOPKINS P00167843 7815478800 2013 2015-11-30 17:44:51Z JEFFREY A KAUFMAN PO BOX 442 NEEDHAM MA 02494 781903 0 X WWW.ACCRF.ORG X 2005 MA SUPPORTING RESEARCH INTO THE TREATMENT AND CURE OF ADENOID CYSTIC CARCINOMA 6 5 1 0 0 0 1677911 531408 0 0 9122 5333 5192 228322 1692225 765063 864887 1414954 0 0 140056 159224 0 0 4947 372808 321251 1377751 1895429 314474 -1130366 2848746 2149665 121802 553087 2726944 1596578 THE ADENOID CYSTIC CARCINOMA RESEARCH FOUNDATION (ACCRF) SUPPORTS RESEARCH INTO ADENOID CYSTIC CARCINOMA THAT WILL ACCELERATE THE DEVELOPMENT OF IMPROVED THERAPIES AND A CURE FOR THE DISEASE. 0 0 239974 214498 SPECIMENS AND MODELS: ACCRF SUPPORTS AND COORDINATES THE DEVELOPMENT AND DISTRIBUTION OF BIOBANKING, CELL LINE AND ANIMAL MODEL RESOURCES FOR RESEARCHERS. THESE RESOURCES ARE THE BUILDING BLOCKS UPON WHICH ALL BASIC, TRANSLATIONAL AND CLINICAL RESEARCH ARE CONSTRUCTED. 998441 942562 BASIC RESEARCH: ACCRF SUPPORTS AND COORDINATES THE DESCRIPTIVE AND FUNCTIONAL STUDIES THAT IDENTIFY THE MOLECULAR TARGETS AND PATHWAYS THAT PERMIT ADENOID CYSTIC CARCINOMA TO PROGRESS. BY FOCUSING ON THE MECHANISMS OF ACTION, RESEARCHERS MAY DISCOVER MORE QUICKLY THE ACHILLES' HEELS OF THE DISEASE. 592649 257894 TRANSLATION TO THE CLINIC: ACCRF SUPPORTS AND COORDINATES RESEARCH INTO TREATMENTS MOST LIKELY TO LEAD TO CLINICAL BENEFIT FOR ADENOID CYSTIC CARCINOMA PATIENTS. DRUG DISCOVERY, DRUG DEVELOPMENT, PRECLINICAL DRUG SCREENING AND CORRELATIVE STUDIES ARE CRUCIAL TO THE INITIATION AND OPTIMAL CONDUCT OF CLINICAL TRIALS. 1831064 1 1 0 0 0 0 0 0 0 0 0 0 0 1 0 1 1 0 0 0 1 1 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 1 1 0 0 0 0 0 1 1 0 0 0 0 X 6 5 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 0 1 1 0 0 MA X MARNIE A KAUFMAN 7814491757 60 SAVOY ROAD NEEDHAM MA 02492 JEFFREY A KAUFMAN EXECUTIVE DIRECTOR 50.00 X X 150000 0 0 RALPH MOLLIS TREASURER 5.00 X X 0 0 0 MARNIE A KAUFMAN DIRECTOR 25.00 X 0 0 0 THOMAS DILENGE DIRECTOR 5.00 X 0 0 0 KARA GELB DIRECTOR 5.00 X 0 0 0 DOUGLAS MEYER DIRECTOR 5.00 X 0 0 0 150000 0 0 1 0 0 0 0 35880 495528 11435 531408 5333 5333 21539 35880 16840 4699 4699 PY GRANTS RETURNED 900099 223623 223623 223623 765063 0 0 233655 1269592 1269592 145362 145362 150000 120000 25500 4500 9224 7379 1568 277 16265 16265 4458 4458 5444 5444 7288 7288 3259 3259 RESEARCH STUDIES EXPENS 281443 281443 WEBSITE DESIGN AND MAIN 1802 1802 LICENSES AND FEES 1127 1122 5 EVENT EXPENSES 165 165 1895429 1831064 59418 4947 79592 236409 2769154 1913256 2848746 2149665 121802 22978 530109 121802 553087 X 2726944 1596578 2726944 1596578 2848746 2149665 -1130366 0 X 0 1 X 1 0 X 1159878 951993 2543071 1677911 531408 6864261 1159878 951993 2543071 1677911 531408 6864261 21177 6843084 3037 3186 8741 9122 5333 29419 6893680 46939 0.99270 0.99380 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 X 565275 24000 24000 541275 223788 223788 765063 1695641 24000 -223623 -199623 1895264 165 165 1895429 PART X, LINE 2: THE FOUNDATION IS EXEMPT FROM INCOME TAXES AS A PUBLIC CHARITY UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. MANAGEMENT BELIEVES THAT THE FOUNDATION OPERATES IN A MANNER CONSISTENT WITH THEIR TAX-EXEMPT STATUS AT BOTH THE STATE AND FEDERAL LEVEL. THE FOUNDATION ANNUALLY FILES IRS FORM 990 - RETURN OF ORGANIZATION EXEMPT FROM INCOME TAX REPORTING VARIOUS INFORMATION THAT THE IRS USES TO MONITOR THE ACTIVITIES OF TAX-EXEMPT ENTITIES. THESE TAX RETURNS ARE SUBJECT TO REVIEW BY THE TAXING AUTHORITIES GENERALLY FOR A PERIOD OF THREE YEARS AFTER THEY WERE FILED. THE TAX RETURNS FOR THE YEARS ENDED JUNE 30, 2010, 2011 AND 2012 ARE SUBJECT TO EXAMINATION BY THE IRS. THE FOUNDATION CURRENTLY HAS NO TAX EXAMINATIONS IN PROGRESS. PART XI, LINE 4B - OTHER ADJUSTMENTS: PY GRANTS RETURNED 223,623. FUNDRAISING EXPENSES INCLUDED IN FUNCTIONAL EXPENSES 165. PART XII, LINE 2D - OTHER ADJUSTMENTS: PY GRANTS RETURNED -223,623. PART XII, LINE 4B - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES INCLUDED IN FUNCTIONAL EXPENSES 165. 1 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 141862 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 3500 0 0 0 0 0 0 145362 0 145362 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, INVESTIGATING THE BASIS FOR OVER-EXPRESSION OF MYB-NFIB FUSION TRANSCRIPTS IN ACC 31862 CHECK OR FUND TRANSFER EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, DEVELOPMENT OF A RETROVIRAL TRANSDUCTION AND TRANSPLANTATION MODEL OF ADENOID CYSTIC CARCINOMA, AND ITS APPLICATION TO TARGETING THE MYB-NFIB FUSION ONCOGENE 110000 CHECK OR FUND TRANSFER 2 0 0 0 0 0 0 PART I, LINE 2: ALL FOREIGN GRANTS ARE MADE TO MAJOR RESEARCH INSTITUTIONS OR HOSPITALS WITH INTERNATIONAL REPUTATIONS. IN ADDITION TO INTERIM WRITTEN REPORTS ON RESEARCH PROJECTS AND A FINAL REPORT FOLLOWING PROJECT COMPLETION, ACCRF ANNUALLY MEETS WITH EACH OF THE FOREIGN GRANTEES TO RECEIVE AN ORAL REPORT ON THE RESEARCH PROJECTS. 2013 FRIENDS OF ACCRF EVENT 57419 35880 21539 5130 275 11435 57419 35880 21539 5130 275 11435 16840 4699 1 DANA-FARBER CANCER INSTITUTE 450 BROOKLINE AVENUE BOSTON MA 02215 042263040 501(C)(3) 98490 SUPPORT FOR STUDY OF THE TRANSGENIC MODEL MASSACHUSETTS GENERAL HOSPITAL MGH RESEARCH MANAGEMENT PO BOX 414876 BOSTON MA 02241 041564655 501(C)(3) 195000 SUPPORT FOR STUDY OF MYB AND THE CHROMATIN LANDSCAPE UNIVERSITY OF NEW MEXICO - HEALTH SCIENCES CENTER MSC 09 5225 HSC ALBUQUERQUE NM 87131 856000642 501(C)(3) 26445 SUPPORT FOR STUDY OF MYB-NFIB FUSION VARIANTS UNIVERSITY OF VIRGINIA - UVA HEALTH SYSTEM OFFICE OF SPONSORED PROGRAMS PO BOX 400195 CHARLOTTESVILLE VA 22904 546001796 501(C)(3) 2500 SUPPORT FOR STUDY OF DISEASE PATHWAYS MEMORIAL SLOAN-KETTERING CANCER CENTER 633 THIRD AVENUE 28TH FLOOR NEW YORK NY 10017 131924236 501(C)(3) 230470 SUPPORT FOR STUDY OF FUNCTIONALIZING THE ACC GENOME TRANSLATIONAL GENOMICS RESEARCH INSTITUTE 445 N 5TH STREET SUITE 600 PHOENIX AZ 85004 331092191 501(C)(3) 106066 SUPPORT FOR STUDY OF EXOME SEQUENCING OF SAMPLES FROM VORINOSTAT CLINICAL TRIAL PARTICIPANTS UNIVERSITY OF MIAMI PO BOX 405803 ATLANTA GA 30384 590624458 501(C)(3) 116008 SUPPORT FOR DEVELOPMENT OF AN IN VITRO CULTURE SYSTEM FOR PRIMARY ACC CELLS TOCAGEN INC 3030 BUNKER HILL ST STE 230 SAN DIEGO CA 92109 261243872 25000 SUPPORT FOR STUDY OF RRV INFECTIVITY MOUNT SINAI SCHOOL OF MEDICINE 1184 5TH AVENUE P1-24 BOX 1236 NEW YORK NY 10029 136171197 501(C)(3) 11000 SUPPORT FOR STUDY OF THE ROLE OF THE MONONUCLEAR PHAGOCYTIC SYSTEM IN FACILITATING PERINEURAL SPREAD OF ADENOID CYSTIC CARCINOMA JOHNS HOPKINS UNIVERSITY 12529 COLLECTIONS CENTER DRIVE CHICAGO IL 60693 520595110 501(C)(3) 227788 SUPPORT FOR STUDY OF WHOLE GENOME SEQUENCING AND INTEGRATED ARRAY ANALYSIS OF ACC YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 1431 SUPPORT FOR THE STUDY OF NEUROTROPHIC SIGNALING UNIVERSITY OF VIRGINIA OFFICE OF SPONSORED PROGRAMS PO BOX 400195 CHARLOTTESVILLE VA 22904 546001796 501(C)(3) 229394 SUPPORT FOR THE STUDY OF SCREENING FOR INHIBITORS OF MYB FUNCTION AS A POTENTIAL THERAPEUTIC APPROACH TO ACC 12 PART I, LINE 2: ACCRF TYPICALLY REQUIRES INTERIM REPORTING ON RESEARCH PROJECTS EVERY SIX MONTHS AS WELL AS A FINAL REPORT FOLLOWING PROJECT COMPLETION. FORM 990, PART VI SECTION B, LINE 13: THE FOUNDATION HAS ONE EMPLOYEE, THE EXECUTIVE DIRECTOR, AND THEREFORE, DOES NOT HAVE A WRITTEN WHISTLEBLOWER POLICY. FORM 990, PART VI SECTION B, LINE 15B: THE FOUNDATION HAS ONE EMPLOYEE, THE EXECUTIVE DIRECTOR. FORM 990, PART VI, SECTION A, LINE 2 THE EXECUTIVE DIRECTOR, JEFFREY A. KAUFMAN, IS MARRIED TO A DIRECTOR ON THE BOARD, MARNIE A. KAUFMAN. FORM 990, PART VI, SECTION B, LINE 11 THE FORM 990 IS PREPARED BY THE EXTERNAL AUDITORS AND REVIEWED BY MANAGEMENT. ONCE ALL ARE SATISFIED WITH THE FORM, IT IS FINALIZED AND A COPY IS SENT TO ALL DIRECTORS. AT THE SUBSEQUENT BOARD OF DIRECTORS MEETING, THE DIRECTORS ARE ASKED IF THEY HAVE ANY QUESTIONS OR COMMENTS AND A GENERAL REVIEW OF THE FORM IS CONDUCTED BY MANAGEMENT. REVISIONS AND CORRECTIONS ARE MADE AS NECESSARY. SUBSEQUENT TO THIS MEETING, THE FORM IS SUBMITTED TO THE IRS. FORM 990, PART VI, SECTION B, LINE 12C A FORMAL PROCESS IS UNDERTAKEN EACH YEAR TO MONITOR AND ENFORCE THE CONFLICT OF INTEREST POLICY CONTAINED WITHIN THE BYLAWS. EACH JANUARY, AN ANNUAL SURVEY ON CONFLICTS OF INTEREST IS COMPLETED BY EVERY DIRECTOR AND OFFICER COVERING THE PRIOR CALENDAR YEAR. ALL BUSINESS RELATIONSHIPS, IF ANY, ARE REPORTED TO THE BOARD OF DIRECTORS. EXCLUDING ANY INTERESTED PARTIES, A MAJORITY OF REMAINING DIRECTORS DETERMINES WHETHER A CONFLICT OF INTEREST HAS OCCURRED AND WHETHER A MORE ADVANTAGEOUS TRANSACTION IS AVAILABLE TO THE FOUNDATION THAT WOULD NOT LEAD TO A CONFLICT OF INTEREST. THE BOARD IS CHARGED WITH TAKING APPROPRIATE DISCIPLINARY AND CORRECTIVE ACTION IN THE CASE OF A VIOLATION OF THE CONFLICT OF INTEREST POLICY. FORM 990, PART VI, SECTION B, LINE 15A A FORMAL STRATEGIC REVIEW, OBJECTIVE SETTING AND PERFORMANCE REVIEW PROCESS IS UNDERTAKEN EACH YEAR. DURING ITS JANUARY MEETING, THE BOARD OF DIRECTORS REVIEWS THE PERFORMANCE OF THE ORGANIZATION AND EXECUTIVE DIRECTOR, BASED ON GOALS AND OBJECTIVES PREVIOUSLY AGREED UPON DURING THE PRIOR CALENDAR YEAR AND ON A PERFORMANCE REPORT SUBMITTED BY THE EXECUTIVE DIRECTOR IN ADVANCE OF THE JANUARY MEETING. THE INDEPENDENT DIRECTORS OF THE BOARD MEET SEPARATELY DURING THE MONTH OF JANUARY TO ASSESS THE EXECUTIVE DIRECTOR'S PERFORMANCE, AGREE ON A PROCESS TO INFORM THE EXECUTIVE DIRECTOR OF ANY AREAS OF NEEDED IMPROVEMENT, AND AGREE UPON A MERIT AND/OR COST OF LIVING SALARY INCREASE FOR THE DIRECTOR, SUBJECT TO AVAILABILITY OF FUNDS AND MAINTENANCE OF AN APPROPRIATE RATIO BETWEEN SUCH SALARY AND ACCRF FUNDRAISING/REVENUE TOTALS IN ANY GIVEN YEAR. DURING THE FEBRUARY MEETING EACH YEAR, THE BOARD OF DIRECTORS SETS PERFORMANCE OBJECTIVES AND METRICS FOR THE ORGANIZATION AND THE EXECUTIVE DIRECTOR FOR THE CURRENT CALENDAR YEAR. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS (ARTICLES OF INCORPORATION AND BY-LAWS), ITS CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS AVAILABLE UPON REQUEST. THE ORGANIZATION WILL MAIL COPIES UPON REQUEST OR PROVIDE COPIES TO THOSE WHO COME TO THE ADMINISTRATIVE OFFICES DURING NORMAL BUSINESS HOURS.