2013-11-08T12:14:00-06:00 2013-06-30 591818353 KAUFMAN ROSSIN & CO PA 2699 S BAYSHORE DRIVE MIAMI FL 33133 990 2012-07-01 363320440 FAMILIES OF SPINAL MUSCULAR ATROPHY FAMI 8008861762 925 BUSSE ROAD ELK GROVE VILLAGE IL 60007 KENNETH HOBBY 8008861762 2013-10-24 1 TANYA M FERREIRO CPA P00450362 3058585600 2013-10-24 2012 2016-02-24 21:20:13Z KENNETH HOBBY 925 BUSSE ROAD ELK GROVE VILLAGE IL 60007 5222835 0 X WWW.CURESMA.ORG X 1984 IL DEVELOPING A TREATMENT AND CURE FOR SPINAL MUSCULAR ATROPHY; PROVIDING RESOURCES FOR PATIENTS & FAMILIES 14 13 20 5000 0 0 4241909 4596877 243698 324212 2108 13901 24839 -2662 4512554 4932328 1027417 1232668 0 0 990573 1137972 0 0 997796 1709615 2137256 3727605 4507896 784949 424432 2594334 3439299 973670 1394203 1620664 2045096 X 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. 0 0 1123351 20344 FAMILIES OF SMA PROVIDES INVALUABLE SUPPORT AND SERVICES TO INDIVIDUALS AND FAMILIES SUCH AS MEDICAL INFORMATION, EQUIPMENT, FAMILY SUPPORT AND RESOURCES. LOCAL COMMUNITY SUPPORT IS AVAILABLE THROUGH OUR VAST VOLUNTEER NETWORK. FOR NEWLY DIAGNOSED FAMILIES WE PROVIDE EMOTIONAL SUPPORT AND WILL PROVIDE A COMPREHENSIVE INFORMATIONAL PACKET AS WELL AS A CARE PACKAGE OF TOYS FOR EACH CHILD, SPECIFIC TO THE DISEASE TYPE. FSMA HAS COMPREHENSIVE INFORMATION AVAILABLE ON CRITICAL TOPICS IN SMA MEDICAL CARE INCLUDING GENETICS, RESPIRATORY CARE, NUTRITION AND MUCH MORE. OUR MEMBERS ARE PROVIDED A SUBSCRIPTION TO OUR FAMILY SUPPORT NEWSLETTER CALLED DIRECTIONS THAT IS DEDICATED TO NEWS AND PROGRESS. COMPASS NEWSLETTER FOCUSES ON RESEARCH UPDATES, HIGHLIGHTING ALL MAJOR RESEARCH DEVELOPMENTS. WE OFFER SUPPORT PROGRAMS SUCH AS THE EQUIPMENT POOL, FREE OF CHARGE TO MEMBERS TO FAMILIES OF SMA. THE POOL INCLUDES A WIDESPREAD LIST OF EQUIPMENT SUITABLE FOR SMA CHILDREN. WE ALSO OFFER THE ASK THE EXPERT SERVICE WHERE FAMILIES CAN GET ANSWERS TO IMPORTANT HEALTH-RELATED QUESTIONS FROM SMA PHYSICIANS AND CLINICIANS 1609837 1232668 FAMILIES OF SMA HAS FUNDED NEARLY TWO THIRDS OF ALL THE ONGOING DRUG PROGRAMS FOR SMA. IN THE PAST 18 MONTHS, FSMA HAS FUNDED FIVE ADDITIONAL NEW DRUG PROGRAMS, INCLUDING THE FOLLOWING IN JUST THE PAST FEW MONTHS: ASSESSING SECOND-GENERATION ASO SEQUENCES FOR SMA; USING A PATIENT DERIVED MOTOR NEURON SCREEN TO IDENTIFY NOVEL SMA THERAPEUTICS; AND TESTING IN SMA MICE A DRUG THAT ENHANCES MUSCLE FUNCTION NOW IN PHASE II TRIALS FOR ALS. DEVELOPING NEW THERAPIES TO TREAT AND ULTIMATELY CURE SMA IS THE DRIVING FORCE BEHIND FAMILIES OF SMA. TO ACHIEVE THIS GOAL, FAMILIES OF SMA AGGRESSIVELY INVESTS IN BASIC RESEARCH TO IDENTIFY THERAPEUTIC APPROACHES AND THEN APPLIED DRUG DEVELOPMENT TO MAKE DRUGS. FSMA HAS FUNDED ALMOST TWO THIRDS OF ALL THE ONGOING DRUG PROGRAMS FOR SMA. CLEAR EVIDENCE OF PROGRESS IS BEING SEEN: 1) PROGRAMS ARE ADVANCING INTO THE CLINICAL TRIAL STAGE OF TESTING. 2) THERE IS BROAD DIVERSITY OF APPROACHES IN DEVELOPMENT. 3) THE TOTAL NUMBER OF PROGRAMS IS GROWING. 4) FUNDING AND RESOURCES FROM GOVERNMENT AND INDUSTRY ARE INCREASING. CLINICAL PROGRAMSOUR COMMUNITY HAS SEEN SUCCESS OVER RECENT YEARS IN ADVANCING BASIC RESEARCH DISCOVERIES FROM THE BENCH TO THE CLINIC. THERE ARE NOW 3 NOVEL PROGRAMS TESTING DRUGS IN HUMAN CLINICAL TRIALS FOR SMA:FAMILIES OF SMA IS ATTACKING THE DISEASE FROM EVERY ANGLE POSSIBLE, AND THERE ARE NOW MORE NEW DRUG PROGRAMS IN DEVELOPMENT THAN AT ANY OTHER TIME. 546564 324212 FAMILIES OF SMA HOSTED ITS 17TH ANNUAL NATIONAL CONFERENCE AT DISNEYLAND IN ANAHEIM, CA. OVER 1350 FAMILIES AND MEMBERS OF THE SCIENTIFIC COMMUNITY PARTICIPATED AND WERE FROM 23 COUNTRIES AROUND THE WORLD. THE CONFERENCE PROVIDES NETWORKING OPPORTUNITIES WITH OTHER FAMILIES, WORKSHOPS AND MEMORABLE CHILDRENS PROGRAMING. IT IS THE GOAL OF FAMILIES OF SMA TO PROVIDE THE FAMILIES WITH THE OPPORTUNITY TO INTERACT WITH RESEARCHERS AND MEDICAL PROVIDERS TO SHARE IDEAS AND HOPE FOR THE FUTURE. 3279752 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 1 0 0 0 0 0 0 0 0 1 25 0 20 1 0 0 0 0 0 1 1 0 0 0 0 X 14 13 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 AK MN NJ NY OH PA TN TX WA WI NM NC SC UT AR KY OR ME WV GA X X KENNETH HOBBY 8008861762 925 BUSSE ROAD ELK GROVE VILLAGE IL 60007 PAULA BARRETT 12.00 X X 0 0 0 KENNETH HOBBY 70.00 X X 146682 0 3318 STEVE RAGLAND 2.00 X X 0 0 0 RICHARD RUBENSTEIN 6.00 X X 0 0 0 ADI RAPPOPORT 6.00 X 0 0 0 NATALIE GIBBS 2.00 X 0 0 0 ROCCO ARIZZI 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 MELISSA MILINOVICH 2.00 X 0 0 0 JUSTIN KUESTER 2.00 X 0 0 0 BARB TRAINOR 2.00 X 0 0 0 BRAD NUNEMAKER 2.00 X 0 0 0 JILL JARECKI 30.00 X 120960 0 0 267642 0 3318 2 0 0 0 0 2940117 20000 1636760 121497 4596877 ANNUAL CONFERENCE 900099 324212 324212 324212 2391 2391 13658 2148 11510 11510 11510 265353 2940117 288359 -23006 -23006 MISCELLANEOUS 900099 20344 20344 20344 4932328 344556 0 -9105 1232668 1232668 161461 107641 26910 26910 857287 519594 80644 257049 38727 23735 1295 13697 80497 38490 6635 35372 64328 64328 34099 19745 9418 4936 53086 51736 1350 137123 81090 22597 33436 42119 28450 7036 6633 294217 189731 16054 88432 124590 110331 14259 70039 46693 11673 11673 51223 25544 25535 144 592023 587143 79 4801 34179 29720 2144 2315 12721 8481 2120 2120 FUNDRAISING EVENTS 532755 64479 11372 456904 PATIENT SERVICES 54758 46934 7824 MERCHANDISE 29667 29667 MISCELLANEOUS 10329 3219 5486 1624 4507896 3279752 230348 997796 1470911 2644145 739867 411463 222704 149349 11015 55490 11755 0 426368 289774 95095 136594 729 0 36461 36461 5797 5797 2594334 3439299 428023 389641 545647 1004562 973670 1394203 X 1257728 1104164 142498 533986 220438 406946 1620664 2045096 2594334 3439299 424432 0 X 0 1 X 1 0 X 3759212 3553474 3603995 4241909 4596877 19755467 101901 2276 23488 23755 20344 171764 895824 837510 243698 324212 2301244 3861113 4451574 4464993 4509362 4941433 22228475 0 0 0 22228475 6111 2892 1278 2193 2391 14865 6111 2892 1278 2193 2391 14865 468656 53666 80770 118750 265353 987195 4335880 4508132 4547041 4630305 5209177 23230535 0.95690 0.85820 0.00060 0.00200 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 0 0 0 0 0 1 53086 53086 0 EXPLANATION OF LOBBYING ACTIVITIES: PART II-B, LINE 1: THE ORGANIZATION PAID WASHINGTON STRATEGIC CONSULTING, INC, A PROFESSIONAL LOBBYING FIRM, FEES TOTALING $53,086 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. 220438 214976 1532 436946 220438 220438 0.06870 0.93130 0 0 426368 289774 136594 136594 X 5220687 288359 288359 4932328 0 4932328 4796255 288359 288359 4507896 0 4507896 DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: PART X, LINE 2: 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 XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES 288,359. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES 288,359. WALK & ROLL 1364503 1236274 128229 124022 DINNERS / GALAS 609530 472406 137124 164337 207 1231437 1231437 3205470 2940117 265353 288359 288359 -23006 EXPLANATION OF SPECIAL EVENTS FORM 990, SCHEDULE D, PART II, FUNDRAISING EVENTS FAMILIES OF SMA HAS MULTIPLE CHAPTERS IN MANY 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) 112700 VALIDATION OF SMA BIOMARKERS IN VALIANT SUBJECTS TRUSTEES OF INDIANA UNIVERSITY 620 UNION DRIVE RM 518 INDIANAPOLIS IN 46202 356001673 501(C)(3) 140000 THE ROLE OF VESICLE COAT PROTEIN A-COP IN THE NEW MODELS OF SMATHE ROLE OF VESICLE COAT PROTEIN A-COP IN THE NEW MODELS OF SMA INDIANA UNIVERSITY 620 UNION DRIVE RM 518 INDIANAPOLIS IN 46202 356001373 501(C)(3) 30000 IDENTIFY AND RECRUIT SMA PATIENTS AND FAMILIES. TRACK RESEARCH STUDIES, EXPAND AWARENESS AND THE USE OF THE REGISTRY. THE UNIVERSITY OF SOUTHERN CALIFORNIA 837 DOWNEY WAY LOS ANGELES CA 96150 956006143 501(C)(3) 75000 RESEARCH OF NOVEL NEUROMUSCULAR PREPARATIONS THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DRIVE COLUMBUS OH 43205 311036372 501(C)(3) 25000 IND ENABLINGS STUDIES FOR A CNS DELIVERED GENE THERAPY UNIVERSITY OF UTAH 201 S PRESDIENTS CIRCLE RM 406A SALT LAKE CITY UT 84112 876000525 501(C)(3) 60056 PILOT STUD OF GLUCOSE LOAD TOLERANCE AND FASTING IN SMA TYPE II THE CHILDREN'S HOSPITAL OF PA 3615 CIVIC CENTER BLVD SUITE ARC 142 PHILADELPHIA PA 19104 231352166 501(C)(3) 50000 DECISIONS RELATED TO GOALS AND LIMITATIONS OF CARE AND THE CHALLENGES IN MAKING THEM FOR PARENTS OF CHILDREN WITH SMA BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA BCM 206 HOUSTON TX 77030 741613878 501(C)(3) 49912 A QUALITY IMPROVEMENT PROJECT TO REDUCE GAPS IN CARE IN THE HOSPITAL SETTING JOHNS HOPKINS UNIVERSITY 855 N WOLFE STREET RANGOS 242 BALITMORE MD 21205 520595110 501(C)(3) 140000 MOTOR AXON DEVELOPMENT IN SMA PARENT PROJECT MUSCULAR DYSTROPHY 401 HACKENSACK AVE 9TH FL HACKENSACK NJ 07601 311405490 501(C)(3) 10000 COLLECT DATA FOR PARENTS PRESIDENT & FELLOWS OF HARVARD COLLEGE 1350 MASSACHUSSETS AVE HOLYOKE CENTER STE 600 CAMBRIDGE MA 02138 042103580 501(C)(3) 150000 A PATIENT-DERIVED MOTOR NEURON SCREEN TO IDENTIFY NOVEL SMA THERAPEUTICS CYTOKINETICS INC 280 E GRAND AVE SO SAN FRANCISCO CA 94080 943291317 100000 EFFECT OF THE FAST SKELETAL MUSCLE TROPONIN ACTIVATOR ON PERIPHERAL SKELETAL MUSCLE FUNCTION THE CURATORS OF THE UNIVERSITY OF MISSOURI OFFICE OF SPONSORED PROGRAMS ADMINISTRATION 310 JESSE HALL COLUMBIA MO 65211 436003859 501(C)(3) 75000 MORPHOLINO ANTISENSE OLIGONUCLEOTIDES FOR THE TREATMENT OF SPINAL MUSCULAR ATROPHY LURIE CHILDREN'S HOSPITAL OF CHICAGO 255 E CHICAGO AVENUE CHICAGO IL 60611 362170833 501(C)(3) 75000 THE WHEN AND WHERE REQUIREMENTS OF SMN IN MILD SMA. LURIE CHILDREN'S HOSPITAL OF CHICAGO 255 E CHICAGO AVENUE CHICAGO IL 60611 362170833 501(C)(3) 140000 REGULATION OF HDAC5 PHOSPHORYLATION BY CDK5 IN SMA. 16 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: 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 $730,000. X SEE PART II 5 117821 RETAIL RENTAL VALUE X SEE PART II 1 3676 RETAIL VALUE 0 0 0 NON REPORTING OF REVENUE: PART I, LINE 33: SCHEDULE M, LINE 33: PAGE 1, LINE 25: DONATED RENTAL EQUIPMENT FOR SPECIAL EVENTS PAGE 1, LINE 26: DONATED SIGNAGE FOR SPECIAL EVENTS 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. FORM 990, PAGE 12, PART XII, QUESTION 2C: NO CHANGES WERE MADE TO THE AUDIT OVERSIGHT PROCESS FOR THE CURRENT YEAR.