2018-12-12T11:31:43-06:00 2018-06-30 362170602 WARADY & DAVIS LLP 1717 DEERFIELD RD SUITE 300S DEERFIELD IL 60015 990 2017-07-01 363320440 FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA FAMI 8477096318 925 BUSSE RD ELK GROVE VILLAGE IL 60007 KENNETH HOBBY PRESIDENT 8477096318 2018-12-12 1 SUSAN GREGGO P00595460 8472679600 69.8.122.20 2018-12-12 09:36:17 CS P 5EA338DD273411C53631BCB15F6F23017D13E252 CBD521CE5675E478A790B3CEE949D5142917D2F1 2017 2019-02-21 02:37:17Z CURE SMA KENNETH HOBBY 925 BUSSE RD ELK GROVE VILLAGE IL 60007 12508035 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. 20 20 42 6950 0 0 5818435 10804912 1381841 1164295 23825 38580 649175 -543412 7873276 11464375 977500 2583429 0 0 2465061 3278671 2500 0 1015466 4120956 3831350 7566017 9693450 307259 1770925 4984542 8151278 2289429 3195356 2695113 4955922 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 1349632 4689 15895 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 EDUCATE 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. 4760605 2549627 4886 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 & REGULATORY RESEARCH, TO PROVIDE THE INFRASTRUCTURE TO TEST THE DRUG CANDIDATES. DURING THIS PERIOD CURE SMA FUNDED 16 NEW AND ONGOING BASIC RESEARCH GRANTS, AS WELL AS TWO ONGOING AND TWO NEW DRUG DISCOVERY PROJECTS. WE ALSO FUNDED AND EXECUTED MULTIPLE CLINICAL AND REGULATORY FOCUSED PROJECTS, INCLUDING PROJECTS TO IMPLEMENT NEWBORN SCREENING FOR SMA AT THE STATE LEVEL, TO INCREASE THE NUMBER OF TRAINED SMA CLINICAL TRIALS SITES IN THE US, AND TO UNDERSTAND THE PATIENT EXPERIENCE WITH SMA. CURE SMA ALSO PROVIDES PATIENT AND HEALTHCARE PROVIDER EDUCATION, WITH EXPERTISE FROM ITS MEDICAL ADVISORY COUNCIL. A MULTI-CENTER CLINICAL DATA REGISTRY WITHIN AN ACCREDITED SMA CARE CENTER NETWORK IS IN DEVELOPMENT. RESOURCES WERE ALSO DEVOTED TO MAINTAINING A WEBSITE LIST OF CARE CENTERS OFFERING AN FDA-APPROVED THERAPY FOR PATIENTS.CURRENTLY, THERE IS ONE APPROVED DRUG FOR SMA, WITH ANOTHER 20 DRUG PROGRAMS IN DEVELOPMENT, INCLUDING SIX IN CLINICAL TRIALS. CURE SMA HAS FUNDED HALF OF ALL THE ONGOING DRUG PROGRAMS IN SMA. 1890532 29113 1159409 WE HOSTED OUR 29TH ANNUAL SMA CONFERENCE IN DALLAS, TX, WITH OVER 1771 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. 8000769 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 47 0 42 1 0 0 0 0 0 1 1 0 0 0 0 X 20 20 1 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 IL AL AK AZ CA CO CT DE FL GA IN IA KS KY LA MD MA MI MN MO NH NJ NM NY NC OH OR PA RI SC TN TX UT VT VA WA WV WI X X MARLINE PAGAN 8477096318 925 BUSSE RD ELK GROVE VILLAGE IL 60007 RICHARD M RUBENSTEIN BOARD CHAIR 15.00 X X 0 0 0 KELLY COLE SECRETARY 6.00 X X 0 0 0 BRAD NUNEMAKER TREASURER 6.00 X X 0 0 0 COREY BRAASTAD DIRECTOR 2.00 X 0 0 0 MATT EVANS DIRECTOR 2.00 X 0 0 0 NICK FARRELL DIRECTOR 2.00 X 0 0 0 JACLYN GREENWOOD DIRECTOR 2.00 X 0 0 0 ANNIE KENNEDY DIRECTOR 2.00 X 0 0 0 EDMUND LEE DIRECTOR 2.00 X 0 0 0 ROB LOCKWOOD DIRECTOR 2.00 X 0 0 0 GILLIAN MULLINS DIRECTOR 2.00 X 0 0 0 DOUGLAS KERR DIRECTOR 2.00 X 0 0 0 MELISSA MILINOVICH DIRECTOR 2.00 X 0 0 0 THOMAS MURRAY DIRECTOR 2.00 X 0 0 0 SPENCER PERLMAN DIRECTOR 2.00 X 0 0 0 SHANNON SHRYNE DIRECTOR 2.00 X 0 0 0 BRYAN SNYDER DIRECTOR 2.00 X 0 0 0 DANYELLE SUN DIRECTOR 2.00 X 0 0 0 PETER STATILE DIRECTOR 2.00 X 0 0 0 GREG ZERZAN DIRECTOR 2.00 X 0 0 0 DOUGLAS ERVIN DIRECTOR (THROUGH JUNE 2017) 2.00 X 0 0 0 STEVE RAGLAND DIRECTOR (THROUGH JUNE 2017) 2.00 X 0 0 0 JOHN PORTER DIRECTOR (THROUGH JUNE 2017) 2.00 X 0 0 0 KENNETH HOBBY PRESIDENT 70.00 X 184965 0 32044 JILL JARECKI CHIEF SCIENTIFIC OFFICER 60.00 X 185457 0 7714 MARLINE PAGAN VICE PRESIDENT, FINANCE & OPERATIONS 60.00 X 103191 0 11906 COLLEEN MCCARTHY O'TOOLE VICE PRESIDENT, EVENTS & FAMILY SUPPORT 60.00 X 113477 0 20846 ROSANGEL CRUZ DIRECTOR OF CLINICAL AFFAIRS 45.00 X 111019 0 12700 698109 0 85210 5 0 1 0 0 3142100 7662812 234192 10804912 ANNUAL CONFERENCE 900099 1159409 1159409 INDUSTRY SPONSORED RESEARCH 900099 4886 4886 1164295 27268 27268 111319 111319 225609 214297 11312 11312 11312 158737 3142100 829363 -670626 -670626 STORE MERCHANDISE 900099 15895 15895 15895 11464375 1180190 0 -520727 2364627 2364627 43802 43802 175000 175000 468876 387555 44595 36726 2373978 1606637 223967 543374 67890 52207 3556 12127 156967 100693 15939 40335 210960 147651 19809 43500 36394 36394 45847 45847 55893 39125 3913 12855 7937 7937 424018 406901 3687 13430 196258 155859 12568 27831 306605 257492 10535 38578 102017 86704 4126 11187 210008 147010 14692 48306 290262 145202 99180 45880 1530579 1512446 1927 16206 191964 177388 2915 11661 21136 11332 6466 3338 WEBSITE 182308 139813 8599 33896 BANK CHARGES, CREDIT CA 86148 43367 42781 BAD DEBT EXPENSE 47030 47030 ANNUAL CAMPAIGN 39861 13763 26098 57085 29562 20166 7357 9693450 8000769 677215 1015466 2251340 3921996 875061 875164 209652 1270382 327032 274082 49845 94520 291035 116880 215957 174155 1032313 1110862 547 406775 22795 23342 4984542 8151278 1299429 1678766 990000 1492497 0 24093 2289429 3195356 X 1212123 1357096 484392 2522697 998598 1076129 2695113 4955922 4984542 8151278 1770925 35817 454067 0 X X 0 1 X 1 0 X 4639671 4716073 5374986 5818435 10804912 31354077 4639671 4716073 5374986 5818435 10804912 31354077 5952938 25401139 3330 21373 19250 86367 138587 268907 585000 15895 600895 32223879 5481405 0.78830 0.82740 X 0 1 0 0 0 0 0 0 1 160851 160851 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. THE ORGANIZATION ALSO MAINTAINS A STAFF MEMBER SPECIALIZING IN LOBBYING AND GOVERNMENT RELATIONS AND THIS STAFF MEMBER'S COMPENSATION INCLUDING TAXES AND BENEFITS TOTALED $104,958 FOR FISCAL YEAR ENDED JUNE 30, 2018. OUR TEAM WORKS WITH PUBLIC POLICY EXPERTS AND ADVOCATES IN WASHINGTON AND IN THE STATE CAPITALS TO KEEP ABREAST OF DEVELOPMENTS IMPACTING THE SMA COMMUNITY. 1032313 48571 58042 28064 1110862 854008 116736 87854 26285 1032313 741466 112008 534 854008 620515 109608 11343 741466 436946 181698 1871 620515 0.03130 0.96870 0 0 287195 116880 170315 3840 3840 174155 DEFERRED RENT 24093 24093 X 11492255 35817 35817 11456438 7937 7937 11464375 9685513 0 9685513 7937 7937 9693450 PART V, LINE 4: THE ENDOWMENT FUND IS INTENDED FOR THE PURPOSE OF PROVING SCHOLARSHIPS WHICH WILL ENABLE CURE SMA TO WAIVE REGISTRATIONS FEES FOR ANY FAMILIES OF PATIENTS NEWLY DIAGNOSED WITH SMA TO ATTEND THE ANNUAL SMA CONFERENCE. PART X, LINE 2: THE ORGANIZATION FOLLOWS THE GUIDANCE IN THE FASB CODIFICATION TOPIC RELATED TO UNCERTAINTY IN INCOME TAXES WHICH PRESCRIBES A COMPREHENSIVE MODEL FOR RECOGNIZING, MEASURING, PRESENTING AND DISCLOSING IN THE FINANCIAL STATEMENTS UNCERTAIN TAX POSITIONS THAT THE ORGANIZATION HAS TAKEN OR EXPECTS TO TAKE IN ITS TAX RETURNS. UNDER THE GUIDANCE, THE ORGANIZATION MAY RECOGNIZE THE TAX BENEFIT FROM AN UNCERTAIN TAX POSITION ONLY IF IT IS "MORE LIKELY THAN NOT" THAT IT IS SUSTAINABLE, BASED ON ITS TECHNICAL MERITS. THE TAX BENEFITS RECOGNIZED IN THE FINANCIAL STATEMENTS FROM SUCH A POSITION SHOULD BE MEASURED BASED ON THE LARGEST BENEFIT THAT HAS A GREATER THAN 50% LIKELIHOOD OF BEING REALIZED UPON ULTIMATE SETTLEMENT WITH A TAXING AUTHORITY HAVING FULL KNOWLEDGE OF ALL RELEVANT INFORMATION. THE ORGANIZATION BELIEVES THAT IT HAS APPROPRIATE SUPPORT FOR THE POSITIONS TAKEN ON ITS RETURNS. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS TO RECIPIENTS IN THE REGION GRANTS 150000 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS IN THE REGION GRANTS 25000 0 0 0 0 0 0 175000 0 175000 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 150000 WIRE TRANSFER NORTH AMERICA RESEARCH 25000 WIRE TRANSFER 0 0 0 0 0 0 PART I, LINE 2 CURE SMA HAS A COMMITTEE THAT EVALUATES ALL GRANT APPLICATIONS AND SELECTS GRANT BASED UPON THE QUALIFICATION OF THE INSTITUTION, RESEARCHER, THE RESEARCH PROJECT'S AND POTENTIAL APPLICABILITY TO SMA. ONCE A GRANT HAS BEEN APPROVED, GRANTEES ARE REQUIRED TO SUBMIT PROGRESS REPORTS BEFORE ADDITIONAL FUNDING IS AUTHORIZED. EACH AWARD INCLUDES THE FOLLOWING TERMS: - INSTITUTE (GRANTEE) SHALL PROVIDE SPONSOR (CURE SMA) WITH REPORTS OF THE WORK PERFORMED UNDER THIS AGREEMENT IN ACCORDANCE WITH THE FOLLOWING SCHEDULE: 1) QUARTERLY WRITTEN PROGRESS REPORTS DUE WITHIN THIRTY (30) DAYS AFTER THE END OF EACH CALENDAR QUARTER. 2) INSTITUTE SHALL SUBMIT TO SPONSOR A COMPREHENSIVE FINAL REPORT WITHIN NINETY (90) DAYS OF TERMINATION OR EXPIRATION OF THE RESEARCH PROJECT. 3) INSTITUTE SHALL ALSO PROVIDE TO SPONSOR A SUCCINCT WRITTEN LAY REPORT OF ANY PUBLICATIONS RESULTING FROM RESEARCH PERFORMED UNDER THIS AGREEMENT CONTAINING A QUOTE FROM THE PRINCIPAL INVESTIGATOR. CONGRESSIONAL DINNER 195250 169970 25280 19701 60320 GALA OF HOPE SO. FL 123986 103536 20450 11267 15800 10550 198 2981601 2868594 113007 711725 3300837 3142100 158737 30968 15800 782595 829363 -670626 1 MEDICAL COLLEGE OF WISCONSIN INC 8701 WATERTOWN PLANK ROAD MILWAUKEE WI 53226 390806261 501(C)(3) 150000 RESEARCH - BASIC NORTHWESTERN UNIVERSITY 750 N LAKE SHORE DR RUBLOFF 7TH FLOOR CHICAGO IL 60611 362167817 501(C)(3) 75000 RESEARCH - BASIC TRUSTEES OF COLUMBIA UNIVERSITY OF NYC PO BOX 29789 GENERAL POST OFFICE NEW YORK NY 10087 135598093 501(C)(3) 229000 RESEARCH - BASIC JOHN HOPKINS UNIVERSITY 12529 COLLECTIONS CENTER DRIVE CHICAGO IL 60693 520595110 501(C)(3) 187500 RESEARCH - BASIC OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 43210 316025986 501(C)(3) 150000 RESEARCH - BASIC MA GENERAL HOSPITAL-RESEARCH PO BOX 414876 BOSTON MA 02241 042697983 501(C)(3) 150000 RESEARCH - BASIC UNIVERSITY OF ROCHESTERDEPT OF NEUROLOGY 601 ELMWOOD AVE BOX 673 ROCHESTER NY 14624 160743209 501(C)(3) 150000 RESEARCH - BASIC RTI INTERNATIONAL 3040 CORNWALLIS ROAD RESEARCH TRIANGLE PARK NC 27709 560686338 501(C)(3) 47940 RESEARCH - NEWBORN SCREENING MI DEPT OF HEALTH & HUMAN SERVICES PO BOX 30437 LANSING MI 48909 386000134 501(C)(3) 213940 RESEARCH - NEWBORN SCREENING BOARD OF REGENTS OF THE UNIVERSITY OF WI-MADISON DRAWER 538 MILWAUKEE WI 53278 396006492 501(C)(3) 211247 RESEARCH - NEWBORN SCREENING UNIVERSITY OF UTAH 201 S PRESIDENTS CIRCLE ROOM 145 SALT LAKE CITY UT 84115 876000525 501(C)(3) 150000 RESEARCH - NEWBORN SCREENING C H NEUROLOGY FOUNDATION INC 300 LONGWOOD AVENUE BOSTON MA 02115 222678594 501(C)(3) 50000 RESEARCH - SITE CAPACITY CHILDREN'S HOSPITAL OF PHILADELPHIA PO BOX 8500 PHILADELPHIA PA 19178 231352166 501(C)(3) 50000 RESEARCH - SITE CAPACITY OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 43210 316025986 501(C)(3) 50000 RESEARCH - SITE CAPACITY JOHN HOPKINS UNIVERSITY 12529 COLLECTIONS CENTER DRIVE CHICAGO IL 60693 520595110 501(C)(3) 50000 RESEARCH - SITE CAPACITY WASHINGTON UNIVERSITY SCHOOL OF MEDICINE 700 ROSEDALE AVENUE ST LOUIS MO 63112 430653611 501(C)(3) 50000 RESEARCH - SITE CAPACITY NEMOURS CHILDRENS HOSPITALNEMOURS FOUNDATION 10140 CENTURION PARKWAY NORTH JACKSONVILLE FL 32256 590634433 501(C)(3) 50000 RESEARCH - SITE CAPACITY COLUMBIA UNIVERSITY PO BOX 29789 GENERAL POST OFFICE NEW YORK NY 10087 135598093 501(C)(3) 50000 RESEARCH - SITE CAPACITY LUCILE PACKARD FOUNDATION FOR CHILDREN'S HEALTH 400 HAMILTON AVENUE SUITE 340 PALO ALTO CA 94301 770440090 501(C)(3) 50000 RESEARCH - SITE CAPACITY GILLETTE CHILDREN'S SPECIALTY HEALTHCARE 200 UNIVERSITY AVENUE EAST ST PAUL MN 55101 363379150 501(C)(3) 25000 RESEARCH - SITE CAPACITY CHILDREN'S HOSPITAL OF COLORADO BOX 285 13123 E 16TH AVE AURORA CO 80045 840166760 501(C)(3) 50000 RESEARCH - SITE CAPACITY REGENTS OF THE UNIVERSITY OF CALIFORNIA 401 HILGARD AVENUE LOS ANGELES CA 90095 956006143 501(C)(3) 50000 RESEARCH - SITE CAPACITY UNIVERSITY OF TEXAS PO BOX 841765 DALLAS TX 75284 756002868 501(C)(3) 50000 RESEARCH - SITE CAPACITY UNIVERSITY OF UT HEALTH BUTTERFIELD FUND 175 N MEDICAL DRIVE EAST SALT LAKE CITY UT 84132 471497384 501(C)(3) 50000 RESEARCH - SITE CAPACITY MA GENERAL HOSPITAL-RESEARCH PO BOX 414876 BOSTON MA 02241 042697983 501(C)(3) 25000 RESEARCH - SITE CAPACITY 25 PHYSICAL THERAPY STIPENDS 5 10000 CARE PACKAGES 582 33802 FMV CARE PACKAGES FOR FAMILIES WITH RECENTLY DIAGNOSED CHILDREN 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. X X X 0 0 0 0 0 0 0 0 0 KENNETH HOBBY PRESIDENT 184965 0 0 0 0 0 7692 0 24352 0 217009 0 0 0 JILL JARECKI CHIEF SCIENTIFIC OFFICER 176617 0 8840 0 0 0 6863 0 851 0 193171 0 0 0 PART I, LINE 3 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. X 31866 X PRINTING/SIGNAGE 11 127243 FAIR MARKET VALUE X OTHER EVENT ITEMS 81 24422 FAIR MARKET VALUE X EVENT ADMISSION TICKETS 64 15875 FAIR MARKET VALUE X FOOD/WATER 39 10705 FAIR MARKET VALUE X PHOTO SESSION 4 9295 FAIR MARKET VALUE X HOTEL/AIRFARE/SPA 16 9163 FAIR MARKET VALUE X EQUIPMENT 2 5000 FAIR MARKET VALUE X JEWELRY. 4 623 FAIR MARKET VALUE 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 THE BOARD CHAIR, RICHARD RUBENSTEIN AND DIRECTOR, PETER STATILE HAVE A FAMILY RELATIONSHIP. FORM 990, PART VI, SECTION B, LINE 11B 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 ADN 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. ON AN ANNUAL BASIS, THE EXECUTIVE COMMITTEE REVIEWS THE CONFLICT OF INTEREST FORMS DISCLOSURE FORMS FILED BY THE TRUSTEES, OFFICERS AND EMPLOYEES FOR POTENTIAL CONFLICTS. ADDITIONALLY, ALL COVERED PERSON HAVE AN ONGOING DUTY TO DISCLOSE POTENTIAL CONFLICTS TO MANAGEMENT. POTENTIAL CONFLICTS OF INTEREST ARE PRESENTED TO THE EXECUTIVE COMMITTEE FOR REVIEW. WHERE POTENTIAL CONFLICT EXIST, A CONFLICT RESOLUTION REPORT IS CREATED AND THE TRUSTEE, OFFICER OR EMPLOYEE IS NOT ALLOWED TO PARTICIPATE IN ANY VOTE OR DISCUSSION OF THE DISCLOSED MATTER. AT THE CURRENT TIME, NO POTENTIAL CONFLICTS OF INTEREST HAVE BEEN IDENTIFIED. FORM 990, PART VI, SECTION B, LINE 15 PRESIDENT AND OTHER OFFICER AND KEY EMPLOYEES'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 DOCUMENTS. FORM 990, PART XII, LINE 2C: THE ORGANIZATION HAS A FINANCE/AUDIT COMMITTEE THAT REVIEWS THE AUDIT AND 990. A REQUEST FOR PROPOSALS WAS ISSUED IN THE CURRENT YEAR AND NEW AUDITORS WERE SELECTED.