2019-12-19T08:54:44-06:00 2019-06-30 362170602 WARADY & DAVIS LLP 1717 DEERFIELD RD SUITE 300S DEERFIELD IL 60015 990 2018-07-01 363320440 FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA FAMI 8477096318 925 BUSSE RD ELK GROVE VILLAGE IL 60007 KENNETH HOBBY PRESIDENT 8477096318 2019-12-19 1 SUSAN GREGGO P00595460 8472679600 69.8.122.20 2019-12-19 08:54:29 CS P 95270F34E65FD9BD57135999DDDEA1966BA73AED CCDFA09DC9BE18D62042912A262073B22479614C 2018 2020-04-17 16:48:07Z CURE SMA KENNETH HOBBY 925 BUSSE RD ELK GROVE VILLAGE IL 60007 15399586 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. 22 22 50 7100 0 0 10804912 9307212 1164295 2007413 38580 131009 -543412 2873353 11464375 14318987 2583429 3840655 0 0 3278671 4344183 0 0 1422300 3831350 5936984 9693450 14121822 1770925 197165 8151278 10376286 3195356 5271480 4955922 5104806 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 3313869 1387184 32658 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. 5155498 2091503 0 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 AND 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. CURRENTLY, THERE ARE TWO APPROVED DRUGS 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.CURE SMA HAS EXPANDED FOCUS TO SUPPORT CLINICAL CARE. THE SMA CARE CENTER NETWORK KICKED OFF IN 2018 AND 14 CENTERS RECEIVED GRANT FUNDING. THESE CENTERS PROVIDE PATIENT CONSENTED ELECTRONIC MEDICAL RECORD DATA TO THE CURE SMA CLINICAL DATA REGISTRY. THE GOAL OF THE SMA CARE CENTER NETWORK AND CLINICAL DATA REGISTRY IS TO IMPROVE CLINICAL CARE FOR INDIVIDUALS WITH SMA BY ESTABLISHING AN EVIDENCE-BASED STANDARD OF CARE THAT WILL BE AVAILABLE AND DISTRIBUTED NATIONALLY. CURE SMA ALSO PROVIDES PATIENT AND HEALTHCARE PROVIDER EDUCATION, WITH EXPERTISE FROM ITS MEDICAL ADVISORY COUNCIL. RESOURCES WERE ALSO DEVOTED TO MAINTAIN WEBSITE LISTINGS OF CARE CENTERS THAT PROVIDE FDA-APPROVED THERAPIES FOR PATIENTS. 3226661 361968 2007413 WE HOSTED OUR 30TH ANNUAL SMA CONFERENCE IN DALLAS, TX, WITH OVER 2400 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. 11696028 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 34 0 50 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 22 22 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 NICK FARRELL VICE CHAIR 4.00 X X 0 0 0 GILLIAN MULLINS SECRETARY 2.00 X X 0 0 0 PETER STATILE TREASURER 2.00 X X 0 0 0 KELLY COLE DIRECTOR 2.00 X 0 0 0 BRAD NUNEMAKER DIRECTOR 2.00 X 0 0 0 COREY BRAASTAD DIRECTOR 2.00 X 0 0 0 MATT EVANS 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 DOUGLAS KERR 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 BRIAN SNYDER DIRECTOR 2.00 X 0 0 0 KELLY JANKOWSKI DIRECTOR 2.00 X 0 0 0 ROBERT GRAHAM DIRECTOR 2.00 X 0 0 0 ALLYSON HENKEL DIRECTOR 2.00 X 0 0 0 AMY MEDINA DIRECTOR 2.00 X 0 0 0 SHANNON ZERZAN DIRECTOR 2.00 X 0 0 0 DANYELLE SUN DIRECTOR (THROUGH MAY 2019) 2.00 X 0 0 0 KENNETH HOBBY PRESIDENT 70.00 X 231320 0 23892 JILL JARECKI CHIEF SCIENTIFIC OFFICER 60.00 X 194644 0 9149 MARY SCHROTH CHIEF MEDICAL OFFICER 45.00 X 209709 0 13942 MARLINE PAGAN VICE PRESIDENT, FINANCE & OPPERATIONS 60.00 X 138866 0 21575 COLLEEN MCCARTHY O'TOOLE VICE PRESIDENT, EVENTS & FAMILY SUPPORT 60.00 X 122528 0 22012 ROSANGEL CRUZ DIRECTOR OF CLINICAL AFFAIRS 45.00 X 117918 0 10840 ERIN KELLY VP, DEVELOPMENT 45.00 X 128054 0 6235 1143039 0 107645 7 0 1 0 DRINKER BIDDLE AND REATH LLP 1500 K STREET NW SUITE 1100 WASHINGTON DC 200051209 LEGAL 169805 1 852437 8454775 126975 9307212 ANNUAL CONFERENCE 900099 2007413 2007413 2007413 45169 45169 559365 473525 85840 85840 85840 3435244 852437 607074 2828170 2828170 STORE MERCHANDISE 900099 32658 32658 SPEAKER HONORARIUMS 900099 13503 13503 GAIN/LOSS ON FOREIGN CURRENCY 900099 -978 -978 45183 14318987 2053574 0 2958201 2800792 2800792 370968 370968 668895 668895 760175 534075 43204 182896 2995311 1927606 406624 661081 82414 53349 22232 6833 245114 160159 19537 65418 261169 171117 31446 58606 146798 141873 1149 3776 31150 31150 8406 8406 556795 483165 51658 21972 342945 227659 40484 74802 519234 447947 19161 52126 320030 224021 22402 73607 217323 151540 26013 39770 292987 191966 35275 65746 2807013 2700987 106026 326702 316253 2091 8358 29038 15785 7847 5406 BANK CHARGES, CREDIT CA 120534 72748 47786 WEBSITE 100133 75100 5007 20026 STAFF DEVELOPMENT/TRAIN 42743 29920 2992 9831 DUES AND SUBSCRIPTIONS/ 23878 23878 51275 2851 48042 382 14121822 11696028 1003494 1422300 3921996 2976858 875164 1405756 1270382 3725831 274082 108319 94520 90394 580311 243134 174155 337177 1110862 1201609 406775 507000 23342 23342 8151278 10376286 1678766 2196037 1492497 3055935 24093 19508 3195356 5271480 X 1357096 497975 2522697 3440835 1076129 1165996 4955922 5104806 8151278 10376286 197165 -48281 0 X X 0 1 X 1 0 X 4716073 5374986 5818435 10804912 9307212 36021618 4716073 5374986 5818435 10804912 9307212 36021618 13089449 22932169 21373 19250 86367 138587 45169 310746 585000 15895 45183 646078 36978442 10367632 0.62010 0.78830 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1 0 0 0 0 0 0 1 202448 202448 0 PART II-B, LINE 1 ORGANIZATION MAINTAINS TWO STAFF MEMBER SPECIALIZING IN LOBBYING AND GOVERNMENT RELATIONS AND THESE STAFF MEMBERS' COMPENSATION INCLUDING TAXES AND BENEFITS TOTALED $166,444 FOR THE FISCAL YEAR ENDED JUNE 30, 2019. 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. 1110862 63994 53541 26788 1201609 1032313 48571 58042 28064 1110862 854008 116736 87854 26285 1032313 741466 112008 534 854008 620515 109608 11343 741466 0.02970 0.97030 0 0 580311 243134 337177 337177 DEFERRED RENT 19508 19508 X 14278000 -48281 15700 -32581 14310581 8406 8406 14318987 14129116 15700 15700 14113416 8406 8406 14121822 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 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 GRANTS TO RECIPIENTS IN THE REGION GRANTS 150000 SOUTH AMERICA 0 0 GRANTS TO RECIPIENTS IN THE REGION GRANTS 200000 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS TO RECIPIENTS IN THE REGION GRANTS 318895 0 0 0 0 0 0 668895 0 668895 NORTH AMERICA RESEARCH 150000 WIRE TRANSFER SOUTH AMERICA RESEARCH 200000 WIRE TRANSFER EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 150000 WIRE TRANSFER EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH - CLINICAL TRIALS 168895 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 190750 161000 29750 29483 22138 CONCERT FOR A CURE 199608 176410 23198 23198 10877 17900 205 3897323 515027 3382296 118880 24421 360177 4287681 852437 3435244 171561 35298 400215 607074 2828170 1 TEXAS TECH UNIVERITY HEALTH SCIENCE CENTER 5001 EL PASO DRIVE MSC 51005 EL PASO TX 79905 752668018 501(C)(3) 150000 RESEARCH - BASIC SALK INSTITUTE FOR BIOLOGICAL STUDIES 10010 NORTH TORREY PINES RD LAS JOLLA CA 92037 952160097 501(C)(3) 150000 RESEARCH - BASIC JOHN HOPKINS UNIVERSITY BANK OF AMERICA NA 12529 COLLECTION CENTER DRIVE CHICAGO IL 60693 520595110 501(C)(3) 200000 RESEARCH - BASIC UNIVERSITY OF COLORADO PO BOX 910238 DENVER CO 80291 846000555 501(C)(3) 150000 RESEARCH - BASIC BRIGHAM AND WOMAN'S HOSPITAL BANK OF AMERICA NA PO BOX 3149 BOSTON MA 02241 042312909 501(C)(3) 75000 RESEARCH - DRUG DISCOVERY TRUSTEES OF COLUMBIA UNIVERSITY - NYC PO BOX 29789 GENERAL POST OFFICE NEW YORK NY 10087 135598093 501(C)(3) 175000 RESEARCH - DRUG DISCOVERY RTI INTERNATIONAL 3040 E CORNWALLIS ROAD RESEARCH TRIANGLE PARK NC 27709 560686338 501(C)(3) 150000 RESEARCH - NEWBORN SCREENING VIRGINIA DGS 650 NORTH 5TH STREET RICHMOND VA 23219 541056975 501(C)(3) 150000 RESEARCH - NEWBORN SCREENING UNIVERSITY OF IOWA 2 GILMORE HALL IOWA CITY IA 52242 426004813 501(C)(3) 150000 RESEARCH - NEWBORN SCREENING MI DEPT OF HEALTHHUMAN PO BOX 30437 LANSING MI 48906 386000134 501(C)(3) 75000 RESEARCH - NEWBORN SCREENING GILLETTE CHILDREN'S SPECIALTY HEALTHCARE 200 UNIVERSITY DRIVE AVENUE E ST PAUL MN 55101 363379150 501(C)(3) 60000 CARE CENTER NETWORK UNIVESITY OF UTAH 201 PRESIDENT CIRCLE ROOM 406 SALT LAKE CITY UT 84112 876000525 501(C)(3) 60000 CARE CENTER NETWORK AR CHILDREN'S RESEARCH INSTITUTE 13 CHILDRENS WAY SLOT 842 LITTLE ROCK AR 72202 710694931 501(C)(3) 60000 CARE CENTER NETWORK YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 60000 CARE CENTER NETWORK UNIVERSITY OF ROCHESTER 601 ELMWOOD AVENUE BOX 673 ROCHESTER NY 14624 160743209 501(C)(3) 60000 CARE CENTER NETWORK CHILDREN'S NATIONAL MEDICAL CENTER 111 MICHIGAN AVE NW SUITE 5400 WASHINGTON DC 20010 521654453 501(C)(3) 60000 CARE CENTER NETWORK SEATTLE CHILDREN'S HOSPITAL 4800 SAND POINT WAY NE SEATTLE WA 98105 910564748 501(C)(3) 60000 CARE CENTER NETWORK ADVOCATE HEALTH & HOSPITAL CORP 3075 HIGHLAND PARKWAY SUITE 600 DOWNERS GROVE IL 60515 362169147 501(C)(3) 60000 CARE CENTER NETWORK CURATORS OF THE UNIVESITY OF MISSOURI 118 UNIVERSITY HALL COLUMBIA MO 65211 436003859 501(C)(3) 60000 CARE CENTER NETWORK UNIVERSITY OF ALABAMA OF BIRMINGHAM 1720 2ND AVENUE SOUTH - AB1170 BIRMINGHAM AL 35294 636005396 501(C)(3) 60000 CARE CENTER NETWORK NEMOURS FOUNDATION 10140 CENTURION PARKWAY NORTH JACKSONVILLE FL 33256 590634433 501(C)(3) 57608 CARE CENTER NETWORK PHOENIX CHILDREN'S HOSPITAL 1919 E THOMAS ROAD PHOENIX AZ 85016 860422559 501(C)(3) 60000 CARE CENTER NETWORK DUKE UNIVERSITY 2200 WEST MAIN ST SUITE 300 DURHAM NC 27705 560532129 501(C)(3) 60000 CARE CENTER NETWORK UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CTR 1935 MEDICAL DISTRICT DR DALLAS TX 75207 752556007 170(C)(3) 60000 CARE CENTER NETWORK TRUSTEES OF COLUMBIA UNIVERSITY - NYC 154 HAVEN AVENUE NEW YORK NY 10032 135598093 501(C)(3) 250000 PNCR - CARE CENTER NETWORK UNIVERSITY OF ROCHESTER 518 HYLAN BUILDING ROCHESTER NY 14627 160743209 501(C)(3) 52899 PNCR - CARE CENTER NETWORK LELAND STANFORD JUNIOR UNIVERSITY 450 SERRA MALL STANFORD CA 94305 941156365 501(C)(3) 75000 PNCR - CARE CENTER NETWORK BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 127035 PNCR - CARE CENTER NETWORK CHILDREN'S HOSPITAL OF PHILADELPHIA 34TH STREET CIVIC CENTER BLVD PHILADELPHIA PA 19104 261352166 501(C)(3) 33250 PNCR - CARE CENTER NETWORK 33 PHYSICAL THERAPY STIPENDS 4 9000 CHILD CARE PACKAGES 221 68262 FMV CARE PACKAGES FOR FAMILIES WITH RECENTLY DIAGNOSED CHILDREN ADULT CARE PACKAGES 885 293706 FMV CARE PACKAGES FOR ADULTS AND TEENS 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 231320 0 0 0 0 0 9183 0 14709 0 255212 0 0 0 JILL JARECKI CHIEF SCIENTIFIC OFFICER 189719 0 4925 0 0 0 7787 0 1362 0 203793 0 0 0 MARY SCHROTH CHIEF MEDICAL OFFICER 204034 0 5675 0 0 0 7693 0 6249 0 223651 0 0 0 MARLINE PAGAN VICE PRESIDENT, FINANCE & OPPERATION 135191 0 3675 0 0 0 5836 0 15739 0 160441 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 1 250 X 1972 X 14351 X PRINTING/SIGNAGE 2 63167 X EVENT ADMISSION TICKETS 104 14671 FAIR MARKET VALUE X FOOD/WATER 79 12856 FAIR MARKET VALUE X EQUIPMENT 2 8900 FAIR MARKET VALUE X AUTOGRAPHED ITEMS 7 4027 FAIR MARKET VALUE X HOTEL/AIRFARE/SPA 9 3131 FAIR MARKET VALUE X SUPPLIES 1 2300 FAIR MARKET VALUE X OTHER EVENT ITEMS 4 1350 FAIR MARKET VALUE 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 THE BOARD CHAIR, RICHARD RUBENSTEIN, AND TREASURER, 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 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. 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.