2024-11-14T14:58:16-06:00 2024-06-30 362170602 WARADY & DAVIS LLP 1717 DEERFIELD RD SUITE 300S DEERFIELD IL 60015 990 2023-07-01 363320440 FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA FAMI 8477096318 925 BUSSE RD ELK GROVE VILLAGE IL 60007 KENNETH HOBBY PRESIDENT 8477096318 2024-11-14 1 1 KOSTA G TCHOBANOV P01302744 8472679600 2024-11-13 2023 2024-10-15 13:58:12Z CURE SMA KENNETH HOBBY 925 BUSSE RD ELK GROVE VILLAGE IL 60007 15896929 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. 23 23 56 6800 0 0 9356093 7517231 3981929 6958513 85789 133015 244964 176476 13668775 14785235 3121518 2062306 0 0 5343889 5757663 0 0 1874461 5737821 7801896 14203228 15621865 -534453 -836630 12713304 10703968 5920573 4582639 6792731 6121329 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 2342300 495608 36109 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 2976714 1465102 1592111 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 SIX NEW AND SIX ONGOING BASIC RESEARCH GRANTS. WE ALSO FUNDED AND EXECUTED MULTIPLE CLINICAL AND REGULATORY FOCUSED PROJECTS, TO INCREASE SMA CLINICAL TRIAL SITE CAPACITY AND READINESS, TO PROVIDE REGULATORY AUTHORITIES WITH DATA ON THE SMA POPULATION AND THEIR REPORTED UNMET NEEDS, TO IDENTIFY POTENTIAL BIOMARKERS FOR SMA, AND TO COLLECT DATA TO UNDERSTAND THE PATIENT EXPERIENCE WITH SMA. CURRENTLY, THERE ARE THREE APPROVED DRUGS FOR SMA, WITH ANOTHER SEVERAL DOZEN DRUG PROGRAMS IN DEVELOPMENT, INCLUDING EIGHT IN CLINICAL TRIALS. CURE SMA SUPPORTED CLINICAL CARE DATA COLLECTION TO BETTER UNDERSTAND SMA CARE. THE CURE SMA CARE CENTER NETWORK KICKED OFF IN 2018. THE GOAL OF THE SMA CARE CENTER NETWORK IS TO GATHER AND THEN DISSEMINATE NEW KNOWLEDGE TO ADVANCE THE SMA STANDARD OF CARE FOR PEDIATRIC AND ADULT PERSONS. IN 2024, CURE SMA PROVIDED FUNDING TO 29 CARE CENTERS. THESE CENTERS PROVIDED PATIENT CONSENTED ELECTRONIC MEDICAL RECORD DATA AND ELECTRONIC CASE REPORT FORMS TO THE CURE SMA CLINICAL DATA REGISTRY. DUE TO INCREASING COSTS AND INEFFICIENCIES IN DATA COLLECTION THROUGH THE ELECTRONIC MEDICAL RECORD, CURE SMA CLOSED THE CLINICAL DATA REGISTRY EFFECTIVE JUNE 2024. CURE SMA ALSO COLLECTS DATA DIRECTLY FROM THE SMA COMMUNITY OF PATIENTS AND CAREGIVERS THROUGH THE ANNUAL COMMUNITY UPDATE SURVEY TO BETTER UNDERSTAND THE SMA JOURNEY. THE ABOVE DATA SOURCES ARE COMBINED AND ANALYZED ANNUALLY TO IDENTIFY TRENDS IN DEMOGRAPHICS, DIAGNOSIS, SMA TREATMENTS, UNMET NEEDS, PATIENT CARE AND OUTCOMES. THE MOST RECENT ANALYZES WERE PUBLISHED IN THE STATE OF SMA 2023 REPORT AVAILABLE ON OUR WEBSITE. AS OF JANUARY 2024, SMA NEWBORN SCREENING HAS BEEN IMPLEMENTED ACROSS IN ALL U.S. STATES AND WASHINGTON, D.C. CURE SMA PUBLISHED "NEWBORN SCREENING AND BIRTH PREVALENCE FOR SPINAL MUSCULAR ATROPHY IN THE US" IN JAMA PEDIATRICS IN JULY 2024 TO PROVIDE UPDATED INFORMATION BASED ON SMA NEWBORN SCREENING RESULTS FROM STATE PUBLIC HEALTH LABORATORIES. IN ADDITION, CURE SMA PUBLISHED "SPINAL MUSCULAR ATROPHY UPDATE IN BEST PRACTICES: RECOMMENDATIONS FOR DIAGNOSIS CONSIDERATIONS" IN NEUROLOGY CLINICAL PRACTICE IN MAY 2024. THESE PUBLICATIONS CONTRIBUTE TO THE GROWING LITERATURE ON SMA CLINICAL CARE. 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. 7083053 101596 5396008 WE HOSTED THE 2024 ANNUAL SMA CONFERENCE IN AUSTIN, TX, WITH OVER 1,975 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. 12402067 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 30 0 56 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 23 23 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 BAKRI ELSHEIKH DIRECTOR 2.00 X 0 0 0 BRAD NUNEMAKER TREASURER & VICE CHAIR 5.00 X X 0 0 0 BRIAN SNYDER DIRECTOR 2.00 X 0 0 0 BRIANNA GROSS DIRECTOR (START 1/1/24) 2.00 X 0 0 0 COREY BRAASTAD DIRECTOR 2.00 X 0 0 0 DIANA CASTRO DIRECTOR 2.00 X 0 0 0 EDMUND LEE DIRECTOR 2.00 X 0 0 0 GILLIAN MULLINS DIRECTOR 2.00 X 0 0 0 JACLYN GREENWOOD DIRECTOR 2.00 X 0 0 0 JOE WISEMAN DIRECTOR (START 4/20/24) 2.00 X 0 0 0 KALEEN ROBINSON DIRECTOR 2.00 X 0 0 0 KAREN MCROY-NEGRIN DIRECTOR (START 1/1/24) 2.00 X 0 0 0 KELLY JANKOWSKI DIRECTOR 2.00 X 0 0 0 MARC GINSKY DIRECTOR (START 4/20/24) 2.00 X 0 0 0 MARK MOORE DIRECTOR (START 4/20/24) 2.00 X 0 0 0 NICK FARRELL BOARD CHAIR 5.00 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 ZERZAN DIRECTOR 2.00 X 0 0 0 SPENCER PERLMAN DIRECTOR 2.00 X 0 0 0 TOM MURRAY DIRECTOR (THROUGH 12/31/23) 2.00 X 0 0 0 KENNETH HOBBY PRESIDENT 70.00 X 338969 0 19102 MARLINE PAGAN CHIEF OPERATING OFFICER 60.00 X 223535 0 28697 MARY SCHROTH CHIEF MEDICAL OFFICER 60.00 X 280222 0 19442 AMY THOMASSON VICE PRESIDENT, MARKETING & COMMUNICATION (THROUGH 50.00 X 147429 0 4173 COLLEEN MCCARTHY O'TOOLE SR VICE PRESIDENT, COMMUNI 60.00 X 176138 0 26598 JACKIE GLASCOCK VICE PRESIDENT OF RESEARCH 40.00 X 143876 0 6919 JAMIE GIBSON CHIEF DEVELOPMENT OFFICER 40.00 X 142692 0 6953 MAYNARD FRIESZ VICE PRESIDENT, POLICY 50.00 X 145434 0 17927 1598295 0 129811 17 0 1 0 0 2635880 4881351 210567 7517231 ANNUAL CONFERENCE 900099 4694448 4694448 INDUSTRY SPONSORED RESEARCH 900099 1581564 1581564 SUMMIT OF STRENGTH SYMPOSIUMS 900099 682501 682501 6958513 118983 118983 641319 627287 14032 14032 14032 595168 2635880 484407 110761 110761 STORE MERCHANDISE 900099 36109 36109 MISCELLANEOUS 900099 19059 19059 GRANT FORFEITURES 900099 10547 10547 65715 14785235 7024228 0 243776 1545948 1545948 101596 101596 414762 414762 1132708 590213 176779 365716 3851666 2457970 540072 853624 96232 62119 13277 20836 325706 199982 44056 81668 351351 215133 50313 85905 5893 5893 38400 38400 15593 15593 321058 286513 20020 14525 33359 24301 4502 4556 556130 473317 24475 58338 562917 394042 39404 129471 122592 75063 17555 29974 300900 184241 43089 73570 5082997 4878749 144781 59467 355693 342540 4858 8295 61850 29758 20209 11883 BANK CHARGES, CREDIT CA 135350 91321 44029 WEBSITE 107744 80807 5387 21550 PROMOTIONAL ITEMS 27854 22313 5541 DUES AND SUBSCRIPTIONS/ 25210 19710 5500 48356 22700 20102 5554 15621865 12402067 1345337 1874461 4602807 3808783 3933196 4000444 1702133 223881 1299136 1137543 253762 161593 1851892 2291309 131096 33647 238418 184311 12713304 10703968 2474064 2962429 1542929 1245367 1465456 0 438124 374843 5920573 4582639 X 1566462 1424129 5226269 4697200 6792731 6121329 12713304 10703968 -836630 165228 0 X X 0 1 X 1 0 X 8139396 7340383 9516614 9356093 7517231 41869717 8139396 7340383 9516614 9356093 7517231 41869717 18135470 23734247 39285 29302 50353 87007 118983 324930 31591 33326 139055 87572 65715 357259 42551906 24990495 0.55780 0.46970 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1 0 0 0 0 0 0 1 318824 318824 0 PART II-B, LINE 1 THE ORGANIZATION MAINTAINED TWO STAFF MEMBERS SPECIALIZING IN LOBBYING AND GOVERNMENT RELATIONS AND THIS STAFF MEMBERS' COMPENSATION INCLUDES TAXES AND BENEFITS AND TOTALED $262,962.06 FOR THE FISCAL YEAR ENDED JUNE 30, 2024. 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. 1851892 214162 222978 2289032 1411074 315342 125476 1851892 1471634 137735 -198295 1411074 1277887 5475 265384 41181 35931 1471634 1201609 66864 42101 32687 1277887 0.00000 0.93500 0.06500 0 0 1246432 1091597 154835 52704 45946 6758 161593 OPERATING LEASE LIABILITY 198989 GRANTS PAYABLE 175854 374843 X 15048760 165228 113890 279118 14769642 15593 15593 14785235 15720162 113890 113890 15606272 15593 15593 15621865 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 413390 SOUTH AMERICA 0 0 GRANTS TO RECIPIENTS IN THE REGION. GRANTS 1372 0 0 0 0 0 0 414762 0 414762 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM BASIC RESEARCH 149085 WIRE TRANSFER 0 CASH VALUE EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM BASIC RESEARCH 112957 WIRE TRANSFER 0 CASH VALUE EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM BASIC RESEARCH 149085 WIRE TRANSFER 0 CASH VALUE 0 6 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. WALK FOR GRAHAM 163995 144262 19733 7513 8060 12463 2870 3667 MUSCLES FOR MCKENNA EOH 122455 88695 33760 2000 2000 23580 7900 59051 108 2944598 2402923 541675 98789 36167 57581 23619 139147 3231048 2635880 595168 108302 46227 93624 34389 201865 484407 110761 1 GILLETTE CHILDREN'S SPECIALTY HEALTHCARE 200 UNIVERSITY DRIVE AVENUE E ST PAUL MN 55101 363379150 501(C)(3) 31200 0 CARE CENTER NETWORK UNIVERSITY OF UTAH 201 PRESIDENT CIRCLE ROOM 406 SALT LAKE CITY UT 84112 876000525 501(C)(3) 27274 0 CARE CENTER NETWORK AR CHILDREN'S RESEARCH INSTITUTE 13 CHILDRENS WAY SLOT 842 LITTLE ROCK AR 72202 710694931 501(C)(3) 9343 0 CARE CENTER NETWORK YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 9002 0 CARE CENTER NETWORK UNIVERSITY OF ROCHESTER 601 ELMWOOD AVENUE BOX 673 ROCHESTER NY 14624 160743209 501(C)(3) 23400 0 CARE CENTER NETWORK CHILDREN'S NATIONAL MEDICAL CENTER 111 MICHIGAN AVE NW SUITE 5400 WASHINGTON DC 20010 521654453 501(C)(3) 9393 0 CARE CENTER NETWORK UNIVERSITY OF ALABAMA OF BIRMINGHAM 1720 2ND AVENUE SOUTH - AB1170 BIRMINGHAM AL 35294 636005396 501(C)(3) 7154 0 CARE CENTER NETWORK CONNECTICUT CHILDREN'S MEDICAL CENTER 282 WASHINGTON STREET HARTFORD CT 06106 060646755 501(C)(3) 9581 0 CARE CENTER NETWORK VANDERBILT UNIVERSITY MEDICAL CENTER PO BOX 121236 DALLAS TX 75312 352528741 501(C)(3) 5031 0 CARE CENTER NETWORK TRUSTEES OF COLUMBIA UNIVERSITY - NYC 154 HAVEN AVENUE NEW YORK NY 10032 135598093 501(C)(3) 17393 0 CARE CENTER NETWORK BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 60200 0 CARE CENTER NETWORK DUKE UNIVERSITY 2200 WEST MAIN ST SUITE 300 DURHAM NC 27705 560532129 501(C)(3) 9019 0 CARE CENTER NETWORK UNIVERSITY OF ROCHESTER 601 ELMWOOD AVENUE BOX 673 ROCHESTER NY 14624 160743209 501(C)(3) 160000 0 PNCR NETWORK BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 150000 0 PNCR NETWORK TRUSTEES OF COLUMBIA UNIVERSITY - NYC 154 HAVEN AVENUE NEW YORK NY 10032 135598093 501(C)(3) 150000 0 PNCR NETWORK LELAND STANFORD JUNIOR UNIVERSITY 450 SERRA MALL STANFORD CA 94305 941156365 501(C)(3) 150000 0 PNCR NETWORK STANFORD UNIVERSITY 420 MONTGOMERY ST SAN FRANCISCO CA 94104 941156365 501(C)(3) 13572 0 CARE CENTER NETWORK CHILDREN'S HEALTHCARE OF ATLANTA 1575 NORTHEAST EXPRESSWAY ATLANTA GA 30329 582367819 501(C)(3) 47000 0 CARE CENTER NETWORK UNIVERSITY OF MICHIGAN 5082 WOLVERINE TOWER ANN ARBOR MI 48109 386006309 501(C)(3) 55397 0 CARE CENTER NETWORK UNIVERSITY OF MIAMI PO BOX 405803 ATLANTA GA 30384 590624458 501(C)(3) 20849 0 CARE CENTER NETWORK UNIVERSITY OF COLORADO DENVER 13001 E 17TH PL RM W1124 AURORA CO 80045 846000555 501(C)(3) 21849 0 CARE CENTER NETWORK THE OHIO STATE UNIVERSITY WEXNER MEDICAL CENTER 1960 KENNY ROAD COLUMBUS OH 43210 316025986 501(C)(3) 29923 0 CARE CENTER NETWORK CHILDREN'S HOSPITAL OF PHILADELPHIA 34TH STREET CIVIC CENTER RD PHILADELPHIA PA 19104 521654453 501(C)(3) 150000 0 PNCR NETWORK THE WASHINGTON UNIVERSITY ONE BROOKINGS DRIVE ST LOUIS MO 63130 430653611 501(C)(3) 53079 0 CARE CENTER NETWORK THE UNIVERSITY OF CALIFORNIA 10889 WILSHIRE BOULEVARD LOS ANGELES CA 90095 956006143 501(C)(3) 29078 0 CARE CENTER NETWORK THE OHIO STATE UNIVERSITY 901 WOODY HAYES DRIVE 2020 BLANKENSHIP HALL COLUMBUS OH 43210 316025986 501(C)(3) 41864 0 BASIC RESEARCH JOHN HOPKINS UNIVERSITY BANK OF AMERICA NA 12529 COLLECTIONS CENTER DRIVE CHICAGO IL 60693 520595110 501(C)(3) 99390 0 BASIC RESEARCH MEDICAL COLLEGE OF WISCONSIN 8701 WATERTOWN PLANK RD MILWAUKEE WI 53226 390806261 501(C)(3) 149085 0 BASIC RESEARCH 32 0 CHILD CARE PACKAGES 174 62515 FMV CARE PACKAGES FOR FAMILIES WITH RECENTLY DIAGNOSED CHILDREN ADULT CARE PACKAGES 152 32767 FMV CARE PACKAGES FOR TEENS AND ADULTS INDEPENDENCE PACKAGES EQUIPMENT 14 1777 FMV CAR BED WITH MODIFIED VEST MEDICAL ID BRACELET SUPPORT PROGRAM 53 1477 FMV MEDICAL ALERT BRACELET AND KEYCHAIN LIFEVAC CHOKING AID DEVICE SUPPORT PROGRAM 117 3060 FMV CHOKING AID DEVICE FOR ANY INDIVIDUAL WITH SMA 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 338969 0 0 0 0 0 12242 0 6860 0 358071 0 0 0 MARY SCHROTH CHIEF MEDICAL OFFICER 280222 0 0 0 0 0 11333 0 8109 0 299664 0 0 0 MARLINE PAGAN CHIEF OPERATING OFFICER 223535 0 0 0 0 0 9046 0 19651 0 252232 0 0 0 COLLEEN MCCARTHY O'TOOLE SR VICE PRESIDENT, COMMUNI 176138 0 0 0 0 0 6992 0 19606 0 202736 0 0 0 MAYNARD FRIESZ VICE PRESIDENT, POLICY 145434 0 0 0 0 0 5821 0 12106 0 163361 0 0 0 AMY THOMASSON VICE PRESIDENT, MARKETING & COMMUNIC 147429 0 0 0 0 0 0 0 4173 0 151602 0 0 0 JACKIE GLASCOCK VICE PRESIDENT OF RESEARCH 143876 0 0 0 0 0 5742 0 1177 0 150795 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 6 154608 FAIR MARKET VALUE X DONATED AUCTION ITEMS 206 55959 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.