2023-11-15T11:00:49-06:00 2023-06-30 362170602 WARADY & DAVIS LLP 1717 DEERFIELD RD SUITE 300S DEERFIELD IL 60015 990 2022-07-01 363320440 FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA FAMI 8477096318 925 BUSSE RD ELK GROVE VILLAGE IL 60007 KENNETH HOBBY PRESIDENT 8477096318 2023-11-15 1 KENNETH HOBBY 999009999 0 KOSTA G TCHOBANOV P01302744 8472679600 2023-11-15 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z CURE SMA KENNETH HOBBY 925 BUSSE RD ELK GROVE VILLAGE IL 60007 14494484 0 X WWW.CURESMA.ORG X 1984 IL CURE SMA LEADS THE WAY TO A WORLD WHERE EVERYONE IMPACTED BY SPINAL MUSCULAR ATROPHY (SMA) IS EMPOWERED TO LEAD INDEPENDENT, SUCCESSFUL, AND FULFILLING LIVES. WE STRIVE TO CREATE A COMMUNITY WHERE EVERY INDIVIDUAL IS HEARD AND FEELS WELCOMED. CURE SMA PROVIDES PRACTICAL SUPPORT PROGRAMS FOR OUR COMMUNITY AND ADVOCATES FOR THEIR NEEDS. WE FUND AND DIRECT COMPREHENSIVE RESEARCH THAT DRIVES BREAKTHROUGHS IN TREATMENT, AND WE ADVANCE ACCESS TO HIGH QUALITY CARE. WE WILL NOT STOP UNTIL WE HAVE A CURE. 19 19 57 6600 0 0 9516614 9356093 3528616 3981929 52111 85789 1924878 244964 15022219 13668775 2854589 3121518 0 0 4907217 5343889 0 0 1194386 6421471 5737821 14183277 14203228 838942 -534453 11297459 12713304 4066739 5920573 7230720 6792731 X CURE SMA LEADS THE WAY TO A WORLD WHERE EVERYONE IMPACTED BY SPINAL MUSCULAR ATROPHY (SMA) IS EMPOWERED TO LEAD INDEPENDENT, SUCCESSFUL, AND FULFILLING LIVES. WE STRIVE TO CREATE A COMMUNITY WHERE EVERY INDIVIDUAL IS HEARD AND FEELS WELCOMED. CURE SMA PROVIDES PRACTICAL SUPPORT PROGRAMS FOR OUR COMMUNITY AND ADVOCATES FOR THEIR NEEDS. WE FUND AND DIRECT COMPREHENSIVE RESEARCH THAT DRIVES BREAKTHROUGHS IN TREATMENT, AND WE ADVANCE ACCESS TO HIGH QUALITY CARE. WE WILL NOT STOP UNTIL WE HAVE A CURE. 0 0 2578143 953682 32744 INDIVIDUALS WITH SMA NEED SPECIALIZED CARE AND EQUIPMENT, WHICH CAN PUT ENORMOUS 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 AND TREATMENTS. 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. EVERY NEW ADULT TO THE COMMUNITY RECEIVES A PACKAGES OF SPECIAL INDEPENDENCE RELATED ITEMS.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 3688752 2091809 1187027 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 FIVE NEW AND EIGHT ONGOING BASIC RESEARCH GRANTS. WE ALSO FUNDED AND EXECUTED MULTIPLE CLINICAL AND REGULATORY FOCUSED PROJECTS, INCLUDING PROJECTS TO IMPLEMENT AND SUPPORT NEWBORN SCREENING FOR SMA AT THE STATE LEVEL, TO INCREASE THE NUMBER OF TRAINED SMA CLINICAL TRIALS SITES IN THE US, TO DEVELOP NEW OUTCOME MEASURES FOR SMA CLINICAL TRIALS, AND TO COLLECT DATA TO UNDERSTAND THE PATIENT EXPERIENCE WITH SMA. CURRENTLY, THERE ARE THREE APPROVED DRUGS FOR SMA, WITH ANOTHER DOZEN DRUG PROGRAMS IN DEVELOPMENT, INCLUDING SEVEN 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 CURE SMA CARE CENTER NETWORK KICKED OFF IN 2018. THE GOAL OF THE SMA CARE CENTER NETWORK IS TO PROVIDE THE BEST HEALTHCARE FOR PEOPLE WITH SMA, INCLUDING OFFERING NEW THERAPIES, AND TO GATHER AND DISSEMINATE NEW KNOWLEDGE TO ADVANCE THE SMA STANDARD OF CARE FOR PEDIATRIC AND ADULT PERSONS. IN 2023, THE SMA CARE CENTER NETWORK EXPANDED BY 5 ADDITIONAL CENTERS FOR A TOTAL OF 29 CENTERS WHO RECEIVED GRANT FUNDING. THESE CENTERS PROVIDE PATIENT CONSENTED ELECTRONIC MEDICAL RECORD DATA AND ELECTRONIC CASE REPORT FORMS TO THE CURE SMA CLINICAL DATA REGISTRY. THE CLINICAL DATA REGISTRY IS CENTRAL TO COLLECTING REAL WORLD DATA AND ESTABLISHING EVIDENCE TO GUIDE SMA CARE BEST PRACTICE THAT WILL BE AVAILABLE AND DISTRIBUTED NATIONALLY. THE CLINICAL DATA REGISTRY HAS PROGRESSIVELY GROWN, AND MORE THAN 1000 PATIENTS ARE ENROLLED. ADDITIONAL DATA ELEMENTS HAVE BEEN ADDED TO BETTER ANALYZE SMA TREATMENT USE. CURE SMA COLLABORATES WITH STATE PUBLIC HEALTH LABS AND LEGISLATURES TO ADVOCATE FOR SMA NEWBORN SCREENING IMPLEMENTATION THROUGHOUT THE US. CURRENTLY 48 STATES AND WASHINGTON, DC SCREEN NEWBORNS FOR SMA FACILITATING EARLY PRESYMPTOMATIC TREATMENT. THIS REPRESENTS 99% OF ALL INFANTS BORN IN THE U.S. CURE SMA CO-CREATED TWO NEW HEALTHCARE PROVIDER ENDURING CONTINUING MEDICAL EDUCATION PROGRAMS IN ADDITION TO THE IN-PERSON CURE SMA CLINICAL CARE SESSION OFFERED IN JUNE 2023. RESOURCES WERE ALSO DEVOTED TO MAINTAINING WEBSITE LISTINGS OF CARE CENTERS, SMA NEWBORN SCREENING REFERRAL CENTERS AND TREATMENT CENTERS THAT PROVIDE FDA-APPROVED SMA TREATMENTS. 5163619 76027 2849730 WE HOSTED THE 2023 ANNUAL SMA CONFERENCE IN ORLANDO, FL, WITH OVER 3,000 REGISTERED ATTENDEES. OUR ANNUAL CONFERENCE IS AN INVALUABLE RESOURCE FOR THE ENTIRE SMA COMMUNITY. THE CONFERENCE IS THE LARGEST IN THE WORLD FOCUSED SPECIFICALLY ON SMA. THE RESEARCHER AND CLINICAL CARE CONFERENCE ATTRACTED THE TOP SCIENTISTS AND COMPANIES IN THE FIELD. THE COMMUNITY CONFERENCE INCLUDES A VARIETY OF WORKSHOPS, KEYNOTE SESSIONS WITH LEADING EXPERTS, AND MORE-PLUS GREAT EVENTS SUCH AS OUR TEEN AND ADULTS WITH SMA SOCIALS, THE FAMILY FRIENDLY RESEARCHER POSTER SESSION AND OUR MEET & GREET WITH A FAMILY FUN FEST. 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. COMMUNITY ATTENDEES 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. 11430514 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 41 0 57 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 19 19 0 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 ALLYSON HENKEL DIRECTOR 2.00 X 0 0 0 AMY MEDINA DIRECTOR 2.00 X 0 0 0 ANNIE KENNEDY DIRECTOR (THROUGH 12/31/22) 2.00 X 0 0 0 BRAD NUNEMAKER TREASURER 2.00 X X 0 0 0 BRIAN SNYDER DIRECTOR 2.00 X 0 0 0 COREY BRAASTAD DIRECTOR 2.00 X 0 0 0 EDMUND LEE DIRECTOR 2.00 X 0 0 0 GILLIAN MULLINS SECRETARY 2.00 X X 0 0 0 JACLYN GREENWOOD DIRECTOR 2.00 X 0 0 0 KELLY COLE DIRECTOR (THROUGH 3/7/23) 2.00 X 0 0 0 KELLY JANKOWSKI DIRECTOR 2.00 X 0 0 0 NICK FARRELL BOARD CHAIR 15.00 X X 0 0 0 PETER STATILE DIRECTOR 2.00 X 0 0 0 ROB LOCKWOOD DIRECTOR 2.00 X 0 0 0 ROBERT GRAHAM DIRECTOR 2.00 X 0 0 0 SHANNON SHRYNE DIRECTOR (THROUGH 12/31/22) 2.00 X 0 0 0 SHANNON ZERZAN DIRECTOR 2.00 X 0 0 0 SPENCER PERLMAN DIRECTOR 2.00 X 0 0 0 TOM MURRAY DIRECTOR 2.00 X 0 0 0 BAKRI ELSHEIKH DIRECTOR 2.00 X 0 0 0 DIANA CASTRO DIRECTOR 2.00 X 0 0 0 KALEEN ROBINSON DIRECTOR 2.00 X 0 0 0 KENNETH HOBBY PRESIDENT 70.00 X 326805 0 18346 MARLINE PAGAN CHIEF OPERATING OFFICER 60.00 X 191950 0 26679 MARY SCHROTH CHIEF MEDICAL OFFICER 60.00 X 258991 0 18238 COLLEEN MCCARTHY O'TOOLE SR VICE PRESIDENT, COMMUNITY SUPPORT 60.00 X 146384 0 24881 MAYNARD FRIESZ VICE PRESIDENT, POLICY & A 50.00 X 128810 0 17650 JACKIE GLASCOCK VICE PRESIDENT OF RESEARCH 40.00 X 122504 0 5808 MICHELLE CASTLE VICE PRESIDENT OF COMPLIANCE DEVELOPMENT 40.00 X 120327 0 7143 PAMELA SWENK CHIEF OF STAFF OFFICER 40.00 X 117371 0 8636 1413142 0 127381 13 0 1 0 WESTERN INSTITUTIONAL REVIEW BOARD INC DEPT 106091 PO BOX 150434 HARTFORD CT 06115 RESEARCH 136271 FAEGRE DRINKER BIDDLE AND REATH LLP PO BOX 53677 PHILADELPHIA PA 15253 LEGAL 126030 2 3114636 6241457 303437 9356093 ANNUAL CONFERENCE 900099 2166179 2166179 INDUSTRY SPONSORED RESEARCH 900099 1138250 1138250 SUMMIT OF STRENGTH SYMPOSIUMS 900099 677500 677500 3981929 87007 87007 433885 435103 -1218 -1218 -1218 547998 3114636 390606 157392 157392 GRANT FORFEITURES 900099 48777 48777 STORE MERCHANDISE 900099 32744 32744 MISCELLANEOUS 900099 6051 6051 87572 13668775 4069501 0 243181 2372768 2372768 76027 76027 672723 672723 934245 605944 159699 168602 3704349 2319632 822196 562521 102107 63713 22977 15417 283588 178525 59775 45288 319600 201508 67723 50369 6072 6072 34100 34100 11211 11211 519572 500878 7122 11572 76133 59158 5883 11092 514406 438249 28033 48124 509779 356845 35685 117249 89738 56579 19016 14143 199387 125714 42250 31423 3133182 2990092 106413 36677 237999 225812 6989 5198 56645 29077 20300 7268 BANK CHARGES, CREDIT CA 114420 76092 38328 WEBSITE 97065 72799 4853 19413 PROMOTIONAL ITEMS 63178 62396 196 586 STAFF DEVELOPMENT/TRAIN 35012 22075 7419 5518 39922 34324 5598 14203228 11430514 1578328 1194386 5444777 4602807 3845469 3933196 122677 93219 1702133 1259135 1005373 288280 253762 1411074 1851892 85619 131096 6344 238418 11297459 12713304 2001020 2474064 2045472 1542929 1465456 20247 438124 4066739 5920573 X 3294012 1566462 3936708 5226269 7230720 6792731 11297459 12713304 -534453 96464 0 X X 0 1 X 1 0 X 9307212 8139396 7340383 9516614 9356093 43659698 9307212 8139396 7340383 9516614 9356093 43659698 22874586 20785112 45169 39285 29302 50353 87007 251116 45183 31591 33326 139055 87572 336727 44247541 22879471 0.46970 0.52000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1 0 0 0 0 0 0 1 302021 302021 0 PART II-B, LINE 1 THE ORGANIZATION MAINTAINED TWO STAFF MEMBERS SPECIALIZING IN LOBBYING AND GOVERNMENT RELATIONS AND THE STAFF MEMBERS' COMPENSATION INCLUDES TAXES AND BENEFITS TOTALING $255,919.24 FOR THE FISCAL YEAR ENDED JUNE 30, 2023. OUR TEAM WORKS WITH PUBLIC POLICY EXPERTS AND ADVOCATES IN WASHINGTON AND IN THE STATE CAPITAL TO KEEP ABREAST OF DEVELOPMENTS IMPACTING THE SMA COMMUNITY. 1411074 315342 125476 1851892 1471634 137735 -198295 1411074 1277887 5475 265384 41181 35931 1471634 1201609 66864 42101 32687 1277887 1110862 63994 53541 26788 1201609 0.00000 1.00000 0 0 1199489 961377 238112 59646 43996 15650 253762 OPERATING LEASE LIABILITY 256196 GRANTS PAYABLE 181928 438124 X 13885599 96464 131571 228035 13657564 11211 11211 13668775 14323588 131571 131571 14192017 11211 11211 14203228 PART V, LINE 4: THE ENDOWMENT FUND IS INTENDED FOR THE PURPOSE OF LAUNCHING UP TO TWO NEW CARE CENTERS PER YEAR. TO THE EXTENT THAT THE ORGANIZATION HAS ESTABLISHED ALL THE CARE CENTERS DEEMED APPROPRIATE BY ITS BOARD OF DIRECTORS, ANY EXCESS APPROPRIATED ANNUAL FUNDS SHALL THEN BE ALLOCATED TO FUND A PORTION OF THE DIRECT COSTS OF OPERATING ALL CARE CENTERS. 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) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS IN THE REGION. GRANTS 524095 SOUTH AMERICA 0 0 GRANTS TO RECIPIENTS IN THE REGION GRANTS 148628 0 0 0 0 0 0 672723 0 672723 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH - CLINICAL TRIALS 204087 WIRE TRANSFER 0 CASH VALUE EUROPE (INCLUDING ICELAND & GREENLAND) BASIC RESEARCH 99085 WIRE TRANSFER 0 CASH VALUE SOUTH AMERICA BASIC RESEARCH 148628 WIRE TRANSFER 0 CASH VALUE EUROPE (INCLUDING ICELAND & GREENLAND) BASIC RESEARCH 145923 WIRE TRANSFER 0 CASH VALUE EUROPE (INCLUDING ICELAND & GREENLAND) BASIC RESEARCH 75000 WIRE TRANSFER 0 CASH VALUE 0 5 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. PART III ACCOUNTING METHOD: WALK FOR GRAHAM 168119 153875 14244 6246 1000 7993 700 1716 MUSCLES FOR MCKENNA EOH 114126 95436 18690 2000 24965 4200 6400 108 3380388 2865325 515063 109586 39874 63564 17995 104367 3662633 3114636 547997 115832 42874 96522 22895 112483 390606 157391 1 GILLETTE CHILDREN'S SPECIALTY HEALTHCARE 200 UNIVERSITY DRIVE AVENUE E ST PAUL MN 55101 363379150 501(C)(3) 75000 0 CARE CENTER NETWORK UNIVERSITY OF UTAH 201 PRESIDENT CIRCLE ROOM 406 SALT LAKE CITY UT 84112 876000525 501(C)(3) 41400 0 CARE CENTER NETWORK AR CHILDREN'S RESEARCH INSTITUTE 13 CHILDRENS WAY SLOT 842 LITTLE ROCK AR 72202 710694931 501(C)(3) 39600 0 CARE CENTER NETWORK YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 25500 0 CARE CENTER NETWORK UNIVERSITY OF ROCHESTER 601 ELMWOOD AVENUE BOX 673 ROCHESTER NY 14624 160743209 501(C)(3) 25200 0 CARE CENTER NETWORK CHILDREN'S NATIONAL MEDICAL CENTER 111 MICHIGAN AVE NW SUITE 5400 WASHINGTON DC 20010 521654453 501(C)(3) 42000 0 CARE CENTER NETWORK ADVOCATE HEALTH & HOSPITAL CORP 3075 HIGHLAND PARKWAY SUITE 600 DOWNERS GROVE IL 60515 362169147 501(C)(3) 20800 0 CARE CENTER NETWORK UNIVERSITY OF ALABAMA OF BIRMINGHAM 1720 2ND AVENUE SOUTH - AB1170 BIRMINGHAM AL 35294 636005396 501(C)(3) 40800 0 CARE CENTER NETWORK PHOENIX CHILDREN'S HOSPITAL 1919 E THOMAS ROAD PHOENIX AZ 85016 860422559 501(C)(3) 41400 0 CARE CENTER NETWORK CONNECTICUT CHILDREN'S MEDICAL CENTER 282 WASHINGTON STREET HARTFORD CT 06106 060646755 501(C)(3) 18400 0 CARE CENTER NETWORK VANDERBILT UNIVERSITY MEDICAL CENTER PO BOX 121236 DALLAS TX 75312 352528741 501(C)(3) 24732 0 CARE CENTER NETWORK TRUSTEES OF COLUMBIA UNIVERSITY - NYC 154 HAVEN AVENUE NEW YORK NY 10032 135598093 501(C)(3) 48000 0 CARE CENTER NETWORK BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 74600 0 CARE CENTER NETWORK DUKE UNIVERSITY 2200 WEST MAIN ST SUITE 300 DURHAM NC 27705 560532129 501(C)(3) 44391 0 CARE CENTER NETWORK SEATTLE CHILDREN'S HOSPITAL 4800 SAND POINT WAY NE SEATTLE WA 98105 910564748 501(C)(3) 39600 0 CARE CENTER NETWORK UNIVERSITY OF TEXAS 1935 MEDICAL DISTRICT DRIVE DALLAS TX 75207 746000203 501(C)(3) 63000 0 CARE CENTER NETWORK CHILDREN'S HOSPITAL OF PHILADELPHIA 34TH STREET CIVIC CENTER RD PHILADELPHIA PA 19104 521654453 501(C)(3) 30000 0 PNCR NETWORK UNIVERSITY OF ROCHESTER 601 ELMWOOD AVENUE BOX 673 ROCHESTER NY 14624 160743209 501(C)(3) 210000 0 PNCR NETWORK BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 240000 0 PNCR NETWORK TRUSTEES OF COLUMBIA UNIVERSITY - NYC 154 HAVEN AVENUE NEW YORK NY 10032 135598093 501(C)(3) 375000 0 PNCR NETWORK LELAND STANFORD JUNIOR UNIVERSITY 450 SERRA MALL STANFORD CA 94305 941156365 501(C)(3) 245000 0 PNCR NETWORK STANFORD UNIVERSITY 420 MONTGOMERY ST SAN FRANCISCO CA 94104 941156365 501(C)(3) 79259 0 CARE CENTER NETWORK CHILDREN'S HEALTHCARE OF ATLANTA 1575 NORTHEAST EXPRESSWAY ATLANTA GA 30329 582367819 501(C)(3) 30000 0 CARE CENTER NETWORK UNIVERSITY OF MICHIGAN 5082 WOLVERINE TOWER ANN ARBOR MI 48109 386006309 501(C)(3) 60000 0 CARE CENTER NETWORK UNIVERSITY OF MIAMI PO BOX 405803 ATLANTA GA 30384 590624458 501(C)(3) 30000 0 CARE CENTER NETWORK UNIVERSITY OF COLORADO DENVER 13001 E 17TH PL RM W1124 AURORA CO 80045 846000555 501(C)(3) 30000 0 CARE CENTER NETWORK THE OHIO STATE UNIVERSITY WEXNER MEDICAL CENTER 1960 KENNY ROAD COLUMBUS OH 43210 316025986 501(C)(3) 30000 0 CARE CENTER NETWORK THE OHIO STATE UNIVERSITY 901 WOODY HAYES DRIVE 2020 BLANKENSHIP HALL COLUMBUS OH 43210 316025986 501(C)(3) 99086 0 BASIC RESEARCH BRIGHAM AND WOMEN'S HOSPITAL INC BANK OF AMERICA NA PO BOX 3149 BOSTON MA 02241 042312909 501(C)(3) 75000 0 DRUG DISCOVERY CHILDREN'S HOSPITAL OF PHILADELPHIA 34TH STREET CIVIC CENTER RD PHILADELPHIA PA 19104 521654453 501(C)(3) 175000 0 PNCR NETWORK 30 0 CHILD CARE PACKAGES 204 61166 FMV CARE PACKAGES FOR FAMILIES WITH RECENTLY DIAGNOSED CHILDREN ADULT CARE PACKAGES 157 10729 FMV CARE PACKAGES FOR TEENS AND ADULTS INDEPENDENCE PACKAGES EQUIPMENT 15 2656 FMV NOT RETURNABLE CAR BED WITH MODIFIED VEST MEDICAL ID BRACELET SUPPORT PROGRAM 50 1476 FMV MEDICAL ID BRACELES FOR TEENS AND ADULTS 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 326805 0 0 0 0 0 11760 0 6586 0 345151 0 0 0 MARY SCHROTH CHIEF MEDICAL OFFICER 258991 0 0 0 0 0 10471 0 7767 0 277229 0 0 0 MARLINE PAGAN CHIEF OPERATING OFFICER 191950 0 0 0 0 0 7838 0 18841 0 218629 0 0 0 COLLEEN MCCARTHY O'TOOLE SR VICE PRESIDENT, COMMUNITY SUPPORT 146384 0 0 0 0 0 6226 0 18655 0 171265 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 5 132407 FAIR MARKET VALUE X DONATED AUCTION ITEMS 226 84870 FAIR MARKET VALUE X SUPPLIES 1 77470 FAIR MARKET VALUE X CLOTHING & HOUSEHOLD GOODS 2 6865 FAIR MARKET VALUE X VARIOUS GIFT CARDS 1 1125 FAIR MARKET VALUE X EQUIPMENT 1 700 FAIR MARKET VALUE 0 1 1 PART I, COLUMN (B): WE ARE REPORTING THE NUMBER OF DONATIONS RECEIVED PART I, LINE 32B: THE ORGANIZATION USES PNC TO RECEIVE AND SELL DONATED STOCK. 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 AUDIT AND COMPLIANCE COMMITTEE REVIEWS THE CONFLICT OF INTEREST DISCLOSURE FORMS FILED BY THE TRUSTEES, OFFICERS AND EMPLOYEES FOR POTENTIAL CONFLICTS. ADDITIONALLY, ALL COVERED PERSONS 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 PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.