2012-11-13T12:53:13-06:00 2012-06-30 591818353 KAUFMAN ROSSIN & CO PA 2699 S BAYSHORE DRIVE MIAMI FL 33133 990 2011-07-01 363320440 FAMILIES OF SPINAL MUSCULAR ATROPHY FAMI 8008861762 925 BUSSE ROAD ELK GROVE VILLAGE IL 60007 KENNETH HOBBY 8008861762 2012-11-13 1 TANYA M FERREIRO CPA P00450362 3058585600 2012-11-13 2011 2016-02-24 21:20:13Z KENNETH HOBBY 925 BUSSE ROAD ELK GROVE VILLAGE IL 60007 4633049 0 X WWW.CURESMA.ORG X 1984 IL DEVELOPING A TREATMENT AND CURE FOR SPINAL MUSCULAR ATROPHY; PROVIDING RESOURCES FOR PATIENTS & FAMILIES 15 14 18 4800 0 0 3603995 4241909 837510 243698 1278 2108 32879 24839 4475662 4512554 347128 1027417 0 0 815336 990573 0 0 981416 1893888 1709615 3056352 3727605 1419310 784949 1679333 2594334 843659 973670 835674 1620664 X FAMILIES OF SPINAL MUSCULAR ATROPHY (SMA) IS DEDICATED TO CREATING A TREATMENT AND CURE FOR SPINAL MUSCULAR ATROPHY BY 1. FUNDING AND ADVANCING A COMPREHENSIVE RESEARCH PROGRAM2. SUPPORTING SMA FAMILIES THROUGH NETWORKING, INFORMATION AND SERVICES3. IMPROVING CARE FOR ALL SMA PATIENTS4. EDUCATING HEALTH PROFESSIONALS AND THE PUBLIC ABOUT SMA5. ENLISTING GOVERNMENT SUPPORT FOR SMA6. EMBRACING ALL TOUCHED BY SMA IN A CARING COMMUNITY 0 0 856230 23755 FAMILIES OF SMA FUNDS AND DIRECTS THE LEADING SMA RESEARCH PROGRAMS TO DEVELOP A TREATMENT AND CURE FOR THE DISEASE. THE SUCCESSFUL RESULTS AND PROGRESS THAT THE ORGANIZATION HAS DELIVERED, FROM BASIC RESEARCH TO DRUG DISCOVERY TO CLINICAL TRIALS, PROVIDE REAL HOPE FOR FAMILIES AND PATIENTS IMPACTED BY THE DISEASE. THE CHARITY HAS INVESTED OVER $50 MILLION IN RESEARCH AND BEEN INVOLVED IN FUNDING HALF OF ALL THE ONGOING NOVEL DRUG PROGRAMS FOR SMA. FAMILIES OF SMA IS A NONPROFIT 501(C)(3) ORGANIZATION, WITH 31 CHAPTERS AND 85,000 MEMBERS AND SUPPORTERS THROUGHOUT THE UNITED STATES AND IS DEDICATED TO CREATING A TREATMENT AND CURE BY: FUNDING AND ADVANCING A COMPREHENSIVE RESEARCH PROGRAM; SUPPORTING SMA FAMILIES THROUGH NETWORKING, INFORMATION AND SERVICES; IMPROVING CARE FOR ALL SMA PATIENTS; EDUCATING HEALTHCARE PROFESSIONALS AND THE PUBLIC ABOUT SMA; ENLISTING GOVERNMENT SUPPORT FOR SMA; EMBRACING ALL TOUCHED BY SMA IN A CARING COMMUNITY. 1352616 1027417 FAMILIES OF SMA FUNDS AND DIRECTS THE LEADING SMA RESEARCH PROGRAMS TO ACCELERATE THE DISCOVERY OF AN EFFECTIVE TREATMENT AND CURE FOR SMA. TO REACH THIS END, OUR RESEARCH FUNDING PROGRAM HAS THREE DISTINCT PARTS: BASIC RESEARCH TO UNRAVEL THE BIOLOGY OF SMA; DRUG DISCOVERY TO MAKE SMA DRUGS; CLINICAL TRIAL INITIATIVES TO TEST NEW DRUGS IN HUMANS. OUR SUCCESSFUL RESULTS AND PROGRESS PROVIDES REAL HOPE FOR FAMILIES AND PATIENTS. FAMILIES OF SMA HAS FUNDED FIVE MULTI-CENTER CLINICAL TRIALS FOR EXISTING DRUGS THAT HAVE POTENTIAL FOR SMA. WE HAVE FUNDED FIVE LEADING NEW DRUG DEVELOPMENT PROGRAMS FOR THERAPIES SPECIALLY DESIGNED TO TREAT SMA. FSMA HAS INVESTED SIGNIFICANT RESOURCES INTO GROWING THE PIPELINE OF NEW THERAPIES FOR SMA, INCLUDING THE FIRST EVER CLINICAL TRIAL APPROVED FOR A NEW DRUG DESIGNED SPECIFICALLY FOR SMA. 352685 243698 FAMILIES OF SMA HOSTS THE NATION'S LARGEST GATHERING OF THOSE AFFECTED BY SMA AND THE RESEARCHERS WORKING TOWARDS A CURE AT THE ANNUAL SMA CONFERENCE. EACH YEAR WE BRING TOGETHER FAMILIES AND RESEARCHERS FROM AROUND THE WORLD TO SHARE IDEAS AND HOPE FOR THE FUTURE. WE COORDINATED THE LARGEST GATHERING OF THE SMA COMMUNITY EVER THIS YEAR WITH 1,500 ATTENDEES. 2561531 1 1 0 1 0 0 0 0 0 1 1 0 0 0 0 1 1 0 0 0 0 0 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 0 1 20 0 18 1 0 0 0 0 0 1 1 0 0 0 0 X 15 14 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AZ CA CO CT FL IA IL KS LA MA MI MD MN NJ NY OH PA TN TX WA WI AK X X KENNETH HOBBY 8008861762 925 BUSSE ROAD ELK GROVE VILLAGE IL 60007 PAULA BARRETT 12.00 X X 0 0 0 ADI RAPPOPORT 6.00 X 0 0 0 NATALIE GIBBS 2.00 X 0 0 0 JEFF ANDRADE 2.00 X 0 0 0 ROCCO ARIZZI 2.00 X 0 0 0 AMY MARQUEZ 2.00 X 0 0 0 MARY MCHALE 2.00 X 0 0 0 DOUGLAS ERWIN 2.00 X 0 0 0 ROBERT LOCKWOOD 2.00 X 0 0 0 STEVE RAGLAND 2.00 X X 0 0 0 MELISSA MILINOVICH 2.00 X 0 0 0 RICHARD RUBENSTEIN 2.00 X X 0 0 0 JUSTIN KUESTER 2.00 X 0 0 0 JAMES GAUDREAU 2.00 X 0 0 0 BARB TRAINOR 2.00 X 0 0 0 BRAD NUNEMAKER 2.00 X 0 0 0 KENNETH HOBBY 70.00 X X 148700 0 0 JILL JARECKI 30.00 X 112981 0 0 NANCY MCINROY 40.00 X 130231 0 4000 391912 0 4000 3 0 0 0 0 1341 2907286 27500 1305782 688 4241909 ANNUAL CONFERENCE 900099 243698 243698 243698 2193 2193 2744 2829 -85 -85 -85 118750 2907286 117666 1084 1084 MISCELLANEOUS 900099 23755 23755 23755 4512554 267453 0 3192 1027417 1027417 404164 244532 31518 128114 496738 241699 50176 204863 18782 14340 1857 2585 70889 33514 5437 31938 30598 30098 500 40379 27566 6083 6730 49441 47626 1815 75856 71946 2102 1808 70324 49532 9500 11292 268918 179096 22779 67043 63151 44094 6386 12671 81956 54637 13660 13659 82292 24767 23932 33593 355867 352685 3182 20999 17073 1963 1963 13363 8909 2227 2227 FUNDRAISING EVENTS 448975 38159 1246 409570 PATIENT SERVICES 52950 45334 7616 MERCHANDISE 34151 34151 MISCELLANEOUS 20395 8507 3977 7911 3727605 2561531 184658 981416 1229433 1470911 195283 739867 109687 222704 11015 29345 11755 350689 255594 70710 95095 2617 729 36461 36461 5797 5797 1679333 2594334 448297 428023 395362 545647 843659 973670 X 745998 1257728 89676 142498 220438 835674 1620664 1679333 2594334 X 784949 41 X 0 1 1 X 0 X 2386340 3759212 3553474 3603995 4266911 17569932 67486 101901 2276 23488 23755 218906 895824 837510 243698 1977032 2453826 3861113 4451574 4464993 4534364 19765870 0 0 0 19765870 34393 6111 2892 1278 2193 46867 34393 6111 2892 1278 2193 46867 2521045 468656 53666 80770 93748 3217885 5009264 4335880 4508132 4547041 4630305 23030622 0.85820 0.74170 0.00200 0.00450 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 0 0 0 0 0 1 49440 49440 0 EXPLANATION OF LOBBYING ACTIVITIES: PART II-B, LINE 1: THE ORGANIZATION PAID WASHINGTON STRATEGIC CONSULTING, INC, A PROFESSIONAL LOBBYING FIRM, FEES TOTALING $49,440 TO LOBBY FOR LEGISLATION THAT BENEFITS THE ORGANIZATION'S MISSION AND TO KEEP THE ORGANIZATION'S MANAGEMENT INFORMED ABOUT LEGISLATION THAT MAY AFFECT THE ORGANIZATION'S MISSION. 0 220438 220438 1.00000 0 0 350689 255594 95095 95095 4512554 3727605 784949 41 41 784990 4630261 41 117666 117707 4512554 0 4512554 3845271 117666 117666 3727605 0 3727605 DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: PART X: THE ORGANIZATION ASSESSES ITS TAX POSITION IN ACCORDANCE WITH "ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES" AS PRESCRIBED BY THE ACCOUNTING STANDARDS CODIFICATION, WHICH PROVIDES GUIDANCE FOR FINANCIAL STATEMENT RECOGNITION AND MEASUREMENT OF UNCERTAIN TAX POSITIONS TAKEN OR EXPECTED TO BE TAKEN IN A TAX RETURN FOR OPEN TAX YEARS (GENERALLY A PERIOD OF THREE YEARS FROM THE LATER OF EACH RETURN'S DUE DATE OR THE DATE FILED) THAT REMAIN SUBJECT TO EXAMINATION BY THE ORGANIZATION'S MAJOR TAX JURISDICTIONS. THE ORGANIZATION BELIEVES THAT IT DOES NOT HAVE ANY SIGNIFICANT UNCERTAIN TAX POSITIONS REQUIRING RECOGNITION OR MEASUREMENT. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES 117,666. PART XIII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES 117,666. WALK & ROLL 1212777 1212777 DINNERS / GALAS 557302 438552 118750 117666 262 1255957 1255957 3026036 2907286 118750 117666 117666 1084 EXPLANATION OF SPECIAL EVENTS FORM 990, SCHEDULE D, PART II, FUNDRAISING EVENTS FAMILIES OF SMA HAS MULTIPLE CHAPTERS IN 22 STATES WHOSE PURPOSE IS TO RAISE FUNDS FOR THE ORGANIZATION. THE AMOUNTS LISTED IN COLUMNS (A) AND (C) ARE SUMMARY AMOUNTS FOR MULTIPLE SIMILAR EVENTS HELD THROUGH OUT THE COUNTRY. AMOUNTS LISTED IN COLUMN (C) ARE FOR A VARIETY OF EVENTS HELD BY CHAPTERS THROUGHOUT THE COUNTRY. COLUMN (A): PARTICIPANTS IN THE WALK AND ROLL EVENTS RECEIVE NO DIRECT BENEFITS OTHER THAN A TEE-SHIRT AND ACCESS TO BEVERAGES ALONG THE RACE PATH AND AT THE END OF THE RACE PATH. COLUMN (C): OTHER EVENTS ARE SIMILAR IN NATURE TO THE FSMA WALK AND ROLLS, SUCH AS FUN-RUNS OR 5K RUNS, AND NO OTHER BENEFITS ARE RECEIVED OTHER THAN A TEE-SHIRT OR RACE BEVERAGES. OTHER EVENTS ARE NOT HELD UNDER THE NATIONALLY BRANDED NAME "WALK AND ROLL" WHICH ARE COORDINATED AND PROMOTED AS A NATION-WIDE FUNDRAISING EVENT BY FSMA. 1 THE OHIO STATE UNIVERSITY RESEARCH FOUNDATION 1960 KENNY ROAD COLUMBUS OH 43210 316025986 501(C)(3) 70000 VALIDATION OF SMA BIOMARKERS IN VALIANT SUBJECTS TRUSTEES OF INDIANA UNIVERSITY 620 UNION DRIVE RM 518 INDIANAPOLIS IN 46202 135598093 501(C)(3) 77898 IDENTIFY, RETAIN AND RECRUIT SMA PATIENTS, TRACK RESEARCH AND EXPAND AWARENESS AND USE OF REGISTRY RUTGERS THE STATE UNIVERSITY OF NEW JERSEY 3 RUTGERS PLAZA 2ND FLOOR NEW BRUNSWICK NJ 08901 226001086 501(C)(3) 60000 STUDY OF THE CECHANISM OF DRUG ACTION IN SMN2 UPREGULATION STANFORD UNIVERSITY 340 PANAMA STREET STANFORD CA 94305 941156365 501(C)(3) CHARACTERIZATION OF RNA'S WITHIN SMN RNA GRANULES IN MOTOR NEURONS THE TRUSTEES OF COLUMBIA UNIVERSITY 630 W 168TH ST BOX 49 NEW YORK NY 10032 135598093 501(C)(3) 220000 RESEARCH OF SMA AS A PROGRESSIVE SYNAPTIC DISEASE EMORY UNIVERSITY 1599 CLIFTON ROAD 4TH FL ATLANTA GA 30329 580566256 501(C)(3) 52500 TO RESEARCH THE EFFECTS OF SMN DEFICIENCY ON MRNA THE UNIVERSITY OF SOUTHERN CALIFORNIA 837 DOWNEY WAY LOS ANGELES CA 96150 956006143 501(C)(3) 17500 RESEARCH OF NOVEL NEUROMUSCULAR PREPARATIONS CALIFORNIA INSTITUTE OF BIOMEDICAL RESEARCH 10931 NORTH TORREY PINES ROAD LA JOLLA CA 92037 956047739 501(C)(3) 120000 RESEARCH OPTIMIZATION OF SMALL MOLECULES THAT INC. SMN2 THE SCRIPPS RESEARCH INSTITUTE 10550 NORTH TORREY PINES ROAD LA JOLLA CA 92037 330435954 170(B)(1) 24060 RESEARCH OF OPTIMIZATION OF SMALL MOLECULES THAT INC. SMN2 THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DRIVE COLUMBUS OH 43205 311036372 501(C)(3) 75000 IND ENABLINGS STUDIES FOR A CNS DELIVERED GENE THERAPY CHARLES RIVER LABORATORIES INC PO BOX 27812 NEW YORK NY 10087 061397316 15280 TOXICITY STUDY OF HUMAN EMBRYONIC STEM CELLS BOARD OF REGENTS UNIVERSITY OF WISCONSIN 21 NORTH PARK ST STE 6401 MADISON WI 53715 391805963 170(C)(1) 30000 DEVELOPMENT OF THE PROTOCOL PROJECT CURE SMA BOOZ ALLEN HAMILTON 1101 WOOTTON PARKWAY ROCKVILLE MD 20852 362513626 34920 TO PROVIDE PROJECT MANAGEMENT SUPPORT AND A DATA REPOSITORY PLAN ARIZONA BOARD OF REGENTS 2020 N CENTRAL AVENUE SUITE 230 PHOENIX AZ 85004 860196696 501(C)(3) 19125 RESEARCH FUNDING 12 PROCEDURE FOR MONITORING GRANTS IN THE U.S.: PART I, LINE 2: SCHEDULE I, PART I, LINE 2: DETAILED REQUIREMENTS MADE OF RECIPIENTS IN GRANT CONTRACTS: RECIPIENTS SHALL PROVIDE THE ORGANIZATION WITH REPORTS OF THE WORK PERFORMED UNDER THIS AGREEMENT IN ACCORDANCE WITH THE FOLLOWING SCHEDULE: QUARTERLY WRITTEN PROGRESS REPORTS DUE WITHIN THIRTY (30) DAYS AFTER THE END OF THE QUARTER. RECIPIENTS SHALL ALSO SUBMIT TO THE ORGANIZATION A COMPREHENSIVE FINAL REPORT WITHIN NINETY (90) DAYS OF TERMINATION OF THE RESEARCH PROJECT. FOR THE PURPOSE OF IDENTIFYING PATENTABLE INVENTIONS NOT COVERED BY PRE EXISTING PATENTS, RECIPIENTS SHALL SUBMIT A COPY OF ALL PROPOSED PUBLICATIONS, PAPERS, AND ANY OTHER WRITTEN DISCLOSURE OF SUCH DATA OR INFORMATION TO THE ORGANIZATION AT LEAST THIRTY (30) DAYS PRIOR TO SUBMISSION FOR PUBLICATION OR DISCLOSURE TO A THIRD PARTY. SCHEDULE I, PART II GRANTS AND OTHER ASSISTANCE TO ORGANIZATIONS IN THE UNITED STATES: THE RESEARCH GRANTS REPORTED ON SCHEDULE I, PART II REFLECT CASH PAYMENTS MADE TO THE RECIPIENTS FOR THE YEAR ENDED JUNE 30, 2012 INCLUDING AMOUNTS REPORTED AS PAYABLE AT THE BEGINNING OF THE YEAR. AMOUNTS ACCRUED BUT UNPAID AS OF JUNE 30, 2012 ARE SHOWN AS GRANTS PAYABLE ON FORM 990, PAGE 11. CERTAIN GRANT PAYMENTS ARE MADE TO GRANTEES BASED ON RESEARCH MILESTONES BEING MET. THESE AMOUNTS ARE NOT INCLUDED IN THE GRANTS PAYABLE. AS OF THE END OF THE CURRENT YEAR, FUTURE AMOUNTS OF THESE PAYMENTS ARE ESTIMATED TO BE $755,000. X X X 0 0 0 0 0 0 0 0 0 FORM 990, PART VI, SECTION B, LINE 11 THE EXECUTIVE COMMITTEE OF THE BOARD AND THE PRESIDENT PERFORM AN INITIAL REVIEW OF FORM 990. AFTER ACCEPTANCE OF FORM 990 BY THE EXECUTIVE COMMITTEE OF THE BOARD AND THE PRESIDENT, FORM 990 IS EMAILED TO THE FULL BOARD FOR REVIEW AND COMMENT BEFORE IT IS FILED. FORM 990, PART VI, SECTION B, LINE 12C MEMBERS OF THE BOARD OF DIRECTORS ARE REQUIRED TO SIGN AN ANNUAL STATEMENT DISCLOSING ANY POSSIBLE CONFLICTS OF INTEREST. FORM 990, PART VI, SECTION B, LINE 15 PRESIDENT'S COMPENSATION - APPROVED BY THE BOARD OF DIRECTORS. THE BOARD'S EXECUTIVE COMMITTEE CONDUCTS A MARKET SURVEY OF THE POSITION USING INDEPENDENT COMPENSATION SOURCES, AND THEN PRESENTS A RECOMMENDATION TO THE FULL BOARD FOR APPROVAL. FORM 990, PART VI, SECTION C, LINE 19 FORM 990, PART VI, SECTION C, LINE 19: THE ORGANIZATION'S GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST. THE REQUEST FOR DOCUMENTS CAN BE MADE IN WRITING OR BY PHONE BY CONTACTING THE NATIONAL OFFICE. WHEN A REQUEST IS MADE FOR DOCUMENTS, THE EXECUTIVE COMMITTEE OF THE BOARD OF DIRECTORS APPROVES THE RELEASE OF THE DOCUMENTS. CHANGES IN NET ASSETS OR FUND BALANCES: FORM 990, PART XI, LINE 5: NET UNREALIZED GAINS ON INVESTMENTS: 41. FORM 990, PAGE 12, PART XII, QUESTION 2C: NO CHANGES WERE MADE TO THE AUDIT OVERSIGHT PROCESS FOR THE CURRENT YEAR.