2014-11-12T09:04:22-06:00 2014-06-30 591818353 KAUFMAN ROSSIN & CO PA 2699 S BAYSHORE DRIVE MIAMI FL 33133 990 2013-07-01 363320440 FAMILIES OF SPINAL MUSCULAR ATROPHY FAMI 8008861762 925 BUSSE ROAD ELK GROVE VILLAGE IL 60007 KENNETH HOBBY PRESIDENT 8008861762 2014-11-12 1 GEOFFREY ADAMS P00541065 3058585600 2014-11-12 2013 2015-11-30 17:44:51Z CURE SMA KENNETH HOBBY 925 BUSSE ROAD ELK GROVE VILLAGE IL 60007 5227297 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 5000 122 0 4596877 4639671 324212 381031 13901 3452 -2662 26540 4932328 5050694 1232668 1004654 0 0 1137972 1355302 0 15413 1361698 2137256 2460052 4507896 4835421 424432 215273 3439299 3380394 1394203 1155939 2045096 2224455 X FAMILIES OF SPINAL MUSCULAR ATROPHY (D/B/A CURE 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 $57 MILLION IN RESEARCH AND BEEN INVOLVED IN FUNDING HALF OF ALL THE ONGOING NOVEL DRUG PROGRAMS FOR SMA. CURE SMA IS A NONPROFIT 501(C)(3) ORGANIZATION, WITH 31 CHAPTERS AND 110,000 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 1273503 17770 CURE 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. CURE SMA HAS COMPREHENSIVE INFORMATION AVAILABLE ON CRITICAL TOPICS ON 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 OF CURE 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. 1375175 1004654 CURE SMA HAS FUNDED NEARLY TWO THIRDS OF ALL THE ONGOING DRUG PROGRAMS FOR SMA. IN THE PAST 18 MONTHS, CURE SMA 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 CURE SMA. TO ACHIEVE THIS GOAL, CURE SMA AGGRESSIVELY INVESTS IN BASIC RESEARCH TO IDENTIFY THERAPEUTIC APPROACHES AND THEN APPLIED DRUG DEVELOPMENT TO MAKE DRUGS. CURE SMA 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 5 NOVEL PROGRAMS TESTING DRUGS IN HUMAN CLINICAL TRIALS FOR SMA:CURE SMA IS ATTACKING THE DISEASE FROM EVERY ANGLE POSSIBLE, AND THERE ARE NOW MORE NEW DRUG PROGRAMS IN DEVELOPMENT THAN AT ANY OTHER TIME. 575251 381031 CURE SMA HOSTED ITS 25TH ANNUAL NATIONAL CONFERENCE IN WASHINGTON DC. OVER 1350 FAMILIES AND MEMBERS OF THE SCIENTIFIC COMMUNITY FROM 23 COUNTRIES AROUND THE WORLD PARTICIPATED. THE CONFERENCE PROVIDES NETWORKING OPPORTUNITIES WITH OTHER FAMILIES, WORKSHOPS AND MEMORABLE CHILDREN'S PROGRAMING. IT IS THE GOAL OF CURE SMA TO PROVIDE THE FAMILIES WITH THE OPPORTUNITY TO INTERACT WITH RESEARCHERS AND MEDICAL PROVIDERS TO SHARE IDEAS AND HOPE FOR THE FUTURE. 3223929 1 1 0 1 0 0 0 0 0 1 1 0 0 0 0 1 1 0 0 0 0 0 0 1 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 25 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 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 RICHARD RUBENSTEIN BOARD CHAIR 6.00 X X 0 0 0 KENNETH HOBBY PRESIDENT 70.00 X X 145167 0 8229 STEVE RAGLAND SECRETARY 6.00 X X 0 0 0 BRAD NUNEMAKER TREASURER 6.00 X X 0 0 0 ADI RAPPOPORT DIRECTOR 2.00 X 0 0 0 NATALIE GIBBS DIRECTOR 2.00 X 0 0 0 ROCCO ARIZZI DIRECTOR 4.00 X 0 0 0 MARY MCHALE DIRECTOR 2.00 X 0 0 0 DOUGLAS ERWIN DIRECTOR 2.00 X 0 0 0 ROBERT LOCKWOOD DIRECTOR 2.00 X 0 0 0 MELISSA MILINOVICH DIRECTOR 2.00 X 0 0 0 JUSTIN KUESTER DIRECTOR 2.00 X 0 0 0 BARB TRAINOR DIRECTOR 2.50 X 0 0 0 COREY BRAASTAD DIRECTOR 2.00 X 0 0 0 GREG ZERZAN DIRECTOR 2.00 X 0 0 0 JILL JARECKI RESEARCH DIRECTOR 70.00 X 125745 0 84 THEODORE WACHHOLZ OPERATIONS/FINANCE DIRECTO 50.00 X 116230 0 6356 387142 0 14669 3 0 1 0 0 3000759 28000 1610912 105099 4639671 ANNUAL CONFERENCE 900099 381031 381031 381031 3330 3330 10096 9974 122 122 122 175399 3000759 166629 8770 8770 MISCELLANEOUS 900099 17770 17770 17770 5050694 398801 122 12100 1004654 1004654 156514 104343 26086 26085 1067752 651507 83053 333192 45387 30222 196 14969 85649 51084 8264 26301 31844 15804 250 15790 36362 22908 7727 5727 49530 48241 1289 15413 15413 254381 99250 41685 113446 57920 38690 9611 9619 284826 176934 18143 89749 132542 78936 6400 47206 86303 56988 14267 15048 99614 27295 17671 54648 577334 575251 343 1740 39846 35220 2313 2313 15114 10076 2519 2519 FUNDRAISING EVENTS 647954 89196 3099 555659 PATIENT SERVICES 111143 103973 7170 MERCHANDISE 23076 23076 MISCELLANEOUS 12263 3357 6878 2028 4835421 3223929 249794 1361698 2644145 2400803 411463 337411 149349 279648 55490 99413 586395 329620 136594 256775 36461 547 5797 5797 3439299 3380394 389641 469441 1004562 686498 1394203 1155939 X 1104164 1275179 533986 358761 406946 590515 2045096 2224455 3439299 3380394 X 215273 -35914 X X 0 1 X 1 0 X 3553474 3603995 4241909 4596877 4639671 20635926 3553474 3603995 4241909 4596877 4639671 20635926 20635926 2892 1278 2193 2391 3330 12084 949490 918280 362448 589565 556430 3376213 24024223 2769908 0.85900 0.85540 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 0 0 0 0 0 1 49530 49530 0 PART II-B, LINE 1: THE ORGANIZATION PAID WASHINGTON STRATEGIC CONSULTING, INC, A PROFESSIONAL LOBBYING FIRM, FEES TOTALING $49,530 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. 436946 181698 1871 620515 220438 214976 1532 436946 220438 220438 0.04830 0.95170 0 0 586395 329620 256775 256775 X 5181409 130715 130715 5050694 0 5050694 5002050 166629 166629 4835421 0 4835421 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 EXPENSE 166,629. ASSET VALUE ADJUSTMENT -35,914. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES 166,629. X X 0 EPIPHANY PRODUCTIONS INC 104 HUME AVENUE ALEXANDRIA VA 22301 FUND RAISING CONSULTANT 0 0 0 0 AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY DC WALK & ROLL 1079594 981127 98467 93544 DINNERS / GALAS 721445 644513 76932 73085 206 1375119 1375119 0 3176158 3000759 175399 166629 166629 8770 SCHEDULE G, PART I, LINE 2B, COLUMN (V) EPIPHANY PRODUCTIONS, INC WAS PAID TO PROVIDE FUND RAISING AND CONSULTING SERVICES AND ADVICE. THE PAYMENTS DO NOT RELATE TO ANY SPECIFIC SPECIAL EVENT. THE FUNDRAISER DOES NOT TAKE POSSESSION OF ANY FUNDS. FORM 990, SCHEDULE D, PART II, FUNDRAISING EVENTS CURE 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 CURE SMA 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 CURE SMA. 1 INDIANA UNIVERSITY 620 UNION DRIVE RM 518 INDIANAPOLIS IN 46202 356001373 501(C)(3) 30312 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) 125000 IND ENABLINGS STUDIES FOR A CNS DELIVERED GENE THERAPY UNIVERSITY OF COLORADO-DENVER PO BOX 910238 DENVER CO 80291 846000555 501(C)(3) 95000 RESEARCH GRANT CALIFORNIA INSTITUTE OF BIOMEDICAL RESEARCH 10931 NORTH TORREY PINES ROAD LA JOLLA CA 92037 453682796 501(C)(3) 195000 RESEARCH GRANT - DRUG DISCOVERY COLD SPRING HARBOR LABRATORY ONE BUNGTOWN ROAD COLD SPRING HARBOR NY 11724 112013303 501(C)(3) 150000 RESEARCH GRANT - DRUG DISCOVERY UNIVERSITY OF EDINBURGH OLD COLLEGE SOUTH BRIDGE EDINBURGH UK 943145385 501(C)(3) 55000 RESEARCH GRANT THE JACKSON LABRATORY 600 MAIN ST BAR HARBOR ME 04609 010211513 501(C)(3) 89342 RESEARCH GRANT HENRY M JACKSON FOUNDATION FOR THE ADVANCEMENT OF MILITARY MEDICINE 6720 A ROCKLEDGE DR BETHESDA MD 20817 521317896 501(C)(3) 95000 RESEARCH GRANT THE MEDICAL COLLEGE OF WISCONSIN 8701 WATERTOWN PLANK ROAD MILWAUKEE WI 53226 390806261 501(C)(3) 95000 RESEARCH GRANT 10 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 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 $410,000. X 0 0 0 0 0 0 0 0 0 KENNETH HOBBY PRESIDENT 145167 0 0 0 0 0 0 0 8229 0 153396 0 0 0 X 6 19424 FAIR MARKET VALUE X SEE PART II 1 85675 RETAIL RENTAL VALUE 0 0 0 PART I, LINE 33: EXPLANATION: PAGE 1, LINE 25: DONATED RENTAL EQUIPMENT 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 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, PART XI, LINE 9: ASSET VALUE ADJUSTMENT -35,914. FORM 990, PAGE 12, PART XII, QUESTION 2C: NO CHANGES WERE MADE TO THE AUDIT OVERSIGHT PROCESS FOR THE CURRENT YEAR.