2016-10-24T15:14:48-05:00 2016-06-30 591818353 KAUFMAN ROSSIN & CO PA 2699 S BAYSHORE DRIVE MIAMI FL 33133 990 2015-07-01 363320440 FAMILIES OF SPINAL MUSCULAR ATROPHY FAMI 8008861762 925 BUSSE ROAD ELK GROVE VILLAGE IL 60007 KENNETH HOBBY PRESIDENT 8008861762 2016-10-21 1 JANET FIFER P01225772 3058585600 2016-10-21 2015 2017-02-10 21:41:12Z CURE SMA KENNETH HOBBY 925 BUSSE ROAD ELK GROVE VILLAGE IL 60007 6874271 0 X WWW.CURESMA.ORG X 1984 IL CURE SMA LEADS THE WAY TO A WORLD WITHOUT SPINAL MUSCULAR ATROPHY, THE NUMBER ONE GENETIC CAUSE OF DEATH FOR INFANTS. CURE SMA FUNDS AND DIRECTS COMPREHENSIVE RESEARCH THAT DRIVES BREAKTHROUGHS IN TREATMENT AND CARE, AND PROVIDES FAMILIES THE SUPPORT THEY NEED FOR TODAY. 15 14 23 5750 0 0 4716073 5149322 403981 815371 18312 -6037 98289 151130 5236655 6109786 1339999 1219840 0 0 1570338 1747547 18809 24159 937681 2466129 2875998 5395275 5867544 -158620 242242 3255155 3916800 1193942 1601166 2061213 2315634 X 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 $60 MILLION IN RESEARCH AND HAS BEEN INVOLVED IN FUNDING HALF OF ALL THE ONGOING NOVEL DRUG PROGRAMS FOR SMA. CURE SMA IS A NONPROFIT 501(C)3 ORGANIZATION, WITH 34 CHAPTERS AND 115,000 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 662833 INDIVIDUALS WITH SMA NEED SPECIALIZED CARE AND EQUIPMENT, WHICH CAN PUT ENORMOUS EMOTIONAL, LOGISTICAL, AND FINANCIAL PRESSURE ON FAMILIES. CURE SMA IS COMMITTED TO MAKING SURE THAT FAMILIES HAVE THE BEST, MOST ACCURATE INFORMATION ABOUT SMA AND WHAT IT MEANS FOR THEM, AND TO MAKING SURE THAT THEY UNDERSTAND ALL THE OPTIONS AND RESOURCES AVAILABLE TO THEM FROM DAY TO DAY CARE TO THE CHANGING LANDSCAPE OF RESEARCH BREAKTHROUGHS.THIS INCLUDES OUR CARE SERIES BOOKLETS, WHICH ARE SENT OUT AS PART OF INFORMATIONAL PACKETS AVAILABLE AT NO COST TO ANYONE WHO REQUESTS ONE. DEVELOPED BY MEDICAL EXPERTS AND REVIEWED BY FAMILIES, THESE BOOKLETS COVER TOPICS SUCH AS BREATHING, NUTRITION, PALLIATIVE CARE, GENETICS, MUSCULOSKELETAL ISSUES, AND MORE. IN ADDITION, OUR EQUIPMENT POOL GIVES FAMILIES ACCESS TO SPECIALIZED ITEMS LIKE CAR BEDS, STROLLERS AND BATHING SYSTEMS AT NO COST. EVERY NEWLY DIAGNOSED FAMILY RECEIVES A CARE PACKAGE FROM CURE SMA, FULL OF TOYS APPROPRIATE TO THE CHILD'S TYPE OF THE DISEASE, IMPARTIAL INFORMATION FOR PARENTS, AND USEFUL ITEMS SUGGESTED BY OTHER SMA PARENTS BASED ON THEIR OWN EXPERIENCES.CURE SMA ALSO EDUCATES THE PUBLIC ABOUT SMA, TO STRENGTHEN THE SUPPORT AVAILABLE TO FAMILIES. THIS INCLUDES DIRECTIONS, A BIANNUAL FAMILY SUPPORT NEWSLETTER, AND COMPASS, A QUARTERLY UPDATE ON RESEARCH DEVELOPMENTS.CURE SMA WORKS DIRECTLY WITH CLINICIANS, MEDICAL DOCTORS, SPECIALISTS, AND SKILLED CAREGIVERS TO ENSURE THAT PATIENTS HAVE ACCESS TO THE BEST POSSIBLE CARE. 2112946 1219840 CURE SMA FOCUSES ON THREE DIFFERENT YET EQUALLY CRITICAL AND INTERDEPENDENT RESEARCH AREAS: BASIC RESEARCH, TO UNDERSTAND THE CAUSE AND BIOLOGY OF SMA; DRUG DISCOVERY, TO CONVERT BASIC RESEARCH IDEAS INTO PRACTICAL NEW DRUG CANDIDATES; AND CLINICAL TRIALS, TO TEST THE DRUG CANDIDATES. CURE SMA ALSO FUNDS CLINICAL CARE RESEARCH TO UNDERSTAND THE ISSUES THAT AFFECT DAILY LIFE FOR PEOPLE WITH SMA, FROM BREATHING TO NUTRITION, AND TO IMPROVE THEIR QUALITY OF LIFE TODAY. CURRENTLY, THERE ARE 18 DRUG PROGRAMS IN DEVELOPMENT, AND SIX OF THOSE ARE IN CLINICAL TRIALS. CURE SMA HAS FUNDED HALF OF ALL THE ONGOING DRUG PROGRAMS IN SMA, INCLUDING FUNDING FOR SIX DRUG PROGRAMS THIS YEAR.THROUGH SURVEYS, FOCUS GROUPS, AND DIRECT MEETINGS WITH THE FDA, CURE SMA IS WORKING TO PURSUE TIMELY AND SAFE APPROVAL OF SMA DRUGS BY THE FDA, ONCE CLINICAL TRIALS HAVE BEEN COMPLETED FOR THE DRUGS NOW IN DEVELOPMENT. THIS INCLUDES MAKING SURE THE PATIENT PERSPECTIVE IS PROPERLY REPRESENTED TO THE FDA ON TOPICS LIKE RISK/BENEFIT ANALYSIS, AND MEANINGFUL CHANGE. CURE SMA ALSO RELEASED "LEARNING ABOUT CLINICAL TRIALS", A NEW GUIDEBOOK TO EDUCATE THE PATIENT AND MEDICAL PROVIDER COMMUNITY ON THE CLINICAL TRIAL PROCESS. 1870868 815371 CURE SMA HOSTED OUR 27TH ANNUAL SMA CONFERENCE IN ANAHEIM, CA, WITH OVER 1,500 TOTAL ATTENDEES. OUR ANNUAL CONFERENCE IS AN INVALUABLE RESOURCE FOR THE ENTIRE SMA COMMUNITY, BRINGING TOGETHER RESEARCHERS, CLINICIANS, AND FAMILIES TO NETWORK, LEARN, AND COLLABORATE. THE CONFERENCE IS THE LARGEST IN THE WORLD FOCUSED SPECIFICALLY ON SMA, AND IT ATTRACTS THE TOP SCIENTISTS AND COMPANIES IN THE FIELD. THE FAMILY CONFERENCE INCLUDES A VARIETY OF WORKSHOPS, KEYNOTE SESSIONS WITH LEADING RESEARCHERS, A FAMILY FRIENDLY RESEARCH POSTER SESSION, AND MORE PLUS FUN EVENTS LIKE OUR DANCE PARTY, MEET AND GREET, PAJAMA PARTY AND MOVIE NIGHT, AND TEEN AND ADULT SOCIAL ACTIVITIES. THE RESEARCHER CONFERENCE CREATES OPEN COMMUNICATION OF EARLY, UNPUBLISHED SCIENTIFIC DATA, ACCELERATING THE PACE OF RESEARCH. THE MEETING ALSO FURTHERS RESEARCH BY BUILDING PRODUCTIVE COLLABORATIONS INCLUDING CROSS DISCIPLINARY DIALOGUE, PARTNERSHIPS, INTEGRATION OF NEW RESEARCHERS AND DRUG COMPANIES, AND EDUCATIONAL OPPORTUNITIES FOR JUNIOR RESEARCHERS.THE MOST POWERFUL ACTIVITIES OF THE CONFERENCE HAPPEN WHEN THE FAMILY AND RESEARCHER CONFERENCES COME TOGETHER. FAMILIES HAVE DIRECT ACCESS TO THE LATEST INFORMATION ABOUT RESEARCH, AND RESEARCHERS HAVE AN OPPORTUNITY TO BUILD PERSONAL CONNECTIONS WITH THE PATIENTS WHO WILL BENEFIT FROM THEIR WORK. 4646647 1 1 0 1 0 0 0 0 0 1 1 0 0 0 0 1 1 0 0 0 0 1 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 33 0 23 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 NJ NY OH TN TX WA AK VA NC SC UT AR KY ME WV GA DE HI ID IN MD MT ND NE NV NH OK SD VT WI WY NM MN MS MA MI MO OR RI PA DC X X KENNETH HOBBY 8008861762 925 BUSSE ROAD ELK GROVE VILLAGE IL 60007 RICHARD RUBENSTEIN BOARD CHAIR 15.00 X X 0 0 0 KENNETH HOBBY PRESIDENT 70.00 X X 147104 0 16827 ROBERT LOCKWOOD SECRETARY 6.00 X X 0 0 0 BRAD NUNEMAKER TREASURER 6.00 X X 0 0 0 ROCCO ARIZZI DIRECTOR 2.00 X 0 0 0 COREY BRAASTAD DIRECTOR 2.00 X 0 0 0 DOUGLAS ERWIN DIRECTOR 2.00 X 0 0 0 JUSTIN KUESTER DIRECTOR 2.00 X 0 0 0 MELISSA MILINOVICH DIRECTOR 2.00 X 0 0 0 STEVE RAGLAND DIRECTOR 2.00 X 0 0 0 ADI RAPPOPORT DIRECTOR 2.00 X 0 0 0 BARB TRAINOR DIRECTOR 2.00 X 0 0 0 GREG ZERZAN DIRECTOR 2.00 X 0 0 0 ANNIE KENNEDY DIRECTOR 2.00 X 0 0 0 SPENCER PERLMAN DIRECTOR 2.00 X 0 0 0 JOHN PORTER DIRECTOR 2.00 X 0 0 0 JILL JARECKI RESEARCH DIRECTOR 50.00 X 137056 0 3733 SUSAN KOVACH FINANCE & ADMINISTRATION DIRECTOR 60.00 X 130000 0 3733 414160 0 24293 3 0 1 0 MCDERMOTT WILL & EMERY LLP 272 MIDDLEFIED ROAD SUITE 100 MENLO PART CA 94025 LEGAL SERVCIES 131507 DRINKER BIDDLE & REATH LLP 1500 K STREET NW WASHINGTON DC 20005 LEGAL AND LOBBYING SERVICES 131355 2 4702320 447002 326317 5149322 ANNUAL CONFERENCE 900099 815371 815371 815371 19250 19250 344844 370131 -25287 -25287 -25287 521892 4702320 374279 147613 147613 23592 20075 3517 3517 6109786 818888 0 141576 1219840 1219840 193907 133796 32964 27147 1344482 896441 78687 369354 86300 55808 2901 27591 122858 81954 9761 31143 138408 138408 39974 39974 128038 88349 8873 30816 24159 24159 5608 5608 79806 78373 218 1215 79531 53743 6358 19430 240689 193154 11085 36450 126195 94599 6310 25286 88442 58964 6523 22955 366374 269357 47871 49146 537887 533403 164 4320 102305 88105 2840 11360 15931 12457 1240 2234 FUNDRAISING EVENTS 733933 534782 12788 186363 BANK CHARGES 77629 31207 3949 42473 MISCELLANEOUS 58251 27640 5084 25527 PATIENT SERVICES 43613 42883 18 712 13384 13384 5867544 4646647 283216 937681 1775752 1961915 1031833 696160 128835 76550 36432 89780 14691 16413 707792 492162 261268 215630 854008 547 547 5797 5797 3255155 3916800 490193 622416 703749 978750 1193942 1601166 X 1034679 1186315 315616 305881 710918 823438 2061213 2315634 3255155 3916800 242242 12179 0 X X 0 1 X 1 0 X 4241909 4596877 4639671 4716073 5374986 23569516 4241909 4596877 4639671 4716073 5374986 23569516 23569516 2193 2391 3330 21373 19250 48537 362448 589565 556430 605696 1111599 3225738 26843791 1456700 0.87800 0.87680 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 0 0 0 0 0 1 128038 128038 0 PART II-B, LINE 1: THE ORGANIZATION PAID DRINKER BIDDLE & REATH. LLP, A LAW FIRM PROVIDING PROFESSIONAL LOBBYING SERVICES, FEES TO LOBBY FOR LEGISLATION THAT WOULD BENEFIT THE ORGANIZATION'S MISSION AND TO KEEP THE ORGANIZATION'S MANAGEMENT INFORMED ABOUT LEGISLATION THAT MAY AFFECT THE ORGANIZATION'S MISSION. 741466 112008 534 854008 620515 109608 11343 741466 436946 181698 1871 620515 220438 214976 1532 436946 220438 220438 0 0 707792 492162 215630 215630 X 6530711 12179 20000 394354 426533 6104178 5608 5608 6109786 6276290 20000 394354 414354 5861936 5608 5608 5867544 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 REPORTED ON PAGE 9, LINE 8B 374,279. COST OF SALES REPORTED ON PAGE 9, LINE 10B 20,075. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES REPORTED ON PAGE 9, LINE 8A 374,279. COST OF SALES REPORTED ON PAGE 9, LINE 10B 20,075. 0 0 0 0 0 0 0 0 0 0 EUROPE (INCLUDING ICELAND & GREENLAND) MEDICAL RESEARCH 90000 WIRE TRANSFER 1 0 0 0 0 0 0 0 SCHEDULE F, PART II, SUPPLEMENTAL INFORMATION A GRANT WAS MADE TO A FOREIGN UNIVERSITY. THE UNVIERSITY IS WELL KNOWN FOR ITS SCIENTIFIC RESEARCH. X X 1 EPIPHANY PRODUCTIONS INC 104 HUME AVE ALEXANDRIA VA 22301 SPECIAL EVENTS ASSISTANCE 0 236025 21659 214366 EPIPHANY PRODUCTIONS INC 104 HUME AVE ALEXANDRIA VA 22301 FUND RAISING CONSULTATIONS 0 0 2500 0 236025 24159 214366 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 CONGRESSIONAL DINNER 236025 100200 135825 26074 25544 GALA OF HOPE 225403 65000 160403 9236 40279 8610 120 4762784 4537120 225664 264536 5224212 4702320 521892 35310 40279 298690 374279 147613 SCHEDULE G, PART I, LINE 2B, COLUMN (V) EPIPHANY PRODUCTIONS, INC WAS PAID TO PROVIDE FUND RAISING AND CONSULTING SERVICES AND ADVICE AND TO ASSIST WITH THE PLANNING AND CONDUCTING OF THE CONGRESSIONAL DINNER. THE FUNDRAISER DOES NOT TAKE POSSESSION OF ANY FUNDS BUT INVOICES THE ORGANIZATION FOR THE EXPENSES. THE FINANCIAL AGREEMENT INCLUDES 10% OF GROSS RECEIPTS FOR THE ASSISTANCE OF THE SPECIFIC SPECIAL EVENT. THESE AMOUNTS ARE INCLUDED ON PART 1 LINE 2B (1). THE FUNDRASIER ALSO PROVIDES GENERAL ADVICE ON FUNDRASING ISSUES. EXPENSES FOR THESE SERVICES ARE INCLUDED ON PART 1, LINE 2B (2). 1 BRIGHAM & WOMEN'S HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 042312909 501(C)(3) 50000 RESEARCH GRANT - DRUG DISCOVERY TRUSTEES OF COLUMBIA UNIVERSITY IN NY 615 WEST 131ST STREET MAIL CODE 8749 NEW YORK NY 10027 135598093 501(C)(3) 304000 RESEARCH GRANT - PATIENT CARE UNIVERSITY OF ROCHESTER 518 HYLAN BUILDING ROCHESTER NY 14627 160743209 501(C)(3) 40000 RESEARCH GRANT - PATIENT CARE JOHNS HOPKINS UNIVERSITY 1101 E 33RD STREET STE C020 BALTIMORE MD 21218 521317896 501(C)(3) 440000 RESEARCH GRANT - DRUG DISCOVERY OHIO STATE UNIVERSITY 901 WOODY HAYES DRIVE 2050 COLUMBUS OH 43210 316025986 501(C)(3) 280000 RESEARCH - BASIC HENRY JACKSON FOUNDATION 6720A ROCKLEDGE DRIVE STE 100 BETHESDA MD 20817 521317896 501(C)(3) 50000 RESEARCH GRANT - DRUG DISCOVERY LURIE CHILDREN'S HOSPITAL PO BOX 269 CHICAGO IL 60690 362170833 501(C)(3) 70000 RESEARCH - BASIC RUTGERS THE STATE UNIVERSITY 65 DAVIDSON RD ROOM 317 PISCATAWAY NJ 08854 226001086 501(C)(3) 140000 RESEARCH - BASIC THE NEMOURS FOUNDATION 10140 CENTURION PKWY N JACKSONVILLE FL 33256 590634433 501(C)(3) 100000 RESEARCH GRANT - PATIENT CARE 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 $774,000. X 0 0 0 0 0 0 0 0 0 KENNETH HOBBY PRESIDENT 147104 0 0 0 0 0 0 0 16827 0 163931 0 0 0 X 8 34355 MARKET VALUE X SEE PART II 14 291962 RETAIL RENTAL VALUE 0 0 0 PART I, LINE 33: . PAGE 1, LINE 25: THE AMOUNT ON LINE 25 INCLUDES DONATED RENTAL EQUIPMENT AND FOOD FOR SPECIAL EVENTS, DONATED EQUIPTMENT, AND OTHER ITEMS. FORM 990, PART VI, SECTION B, LINE 11 THE FINANCE COMMITTEE OF THE BOARD AND THE PRESIDENT PERFORM AN INITIAL REVIEW OF FORM 990. AFTER ACCEPTANCE OF FORM 990 BY THE FINANCE COMMITTEE AND THE PRESIDENT, FORM 990 IS EMAILED TO THE FULL BOARD FOR REVIEW AND APPROVAL 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, PAGE 12, PART XII, QUESTION 2C: NO CHANGES WERE MADE TO THE AUDIT OVERSIGHT PROCESS FOR THE CURRENT YEAR.