2020-11-10T13:50:50-06:00 2020-06-30 362170602 WARADY & DAVIS LLP 1717 DEERFIELD RD SUITE 300S DEERFIELD IL 60015 990 2019-07-01 363320440 FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA FAMI 8477096318 925 BUSSE RD ELK GROVE VILLAGE IL 60007 KENNETH HOBBY PRESIDENT 8477096318 2020-10-28 1 SUSAN GREGGO P00595460 8472679600 69.8.122.20 2020-10-28 09:55:50 CD P D33A8401185B09323B1BAB0F126D6E4565A0C3FD FE07A33383793F02E8A243F58F0D10152E23DD46 2019 2021-01-29 14:40:06Z CURE SMA KENNETH HOBBY 925 BUSSE RD ELK GROVE VILLAGE IL 60007 12841532 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 59 6400 0 0 9307212 8139396 2007413 1640500 131009 43460 2873353 2260174 14318987 12083530 3840655 2656514 0 0 4344183 4652897 0 0 1368488 5936984 3810585 14121822 11119996 197165 963534 10376286 10151974 5271480 4074044 5104806 6077930 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 2262997 561315 23338 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. 3804847 1696807 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. 2831415 398392 1648753 WE HOSTED OUR 32ND ANNUAL SMA CONFERENCE VIRTUALLY, WITH OVER 6,600 REGISTERED TO ATTEND. 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 FAMILY CONFERENCE INCLUDES A VARIETY OF WORKSHOPS, KEYNOTE SESSIONS WITH LEADING EXPERTS, AND MORE-PLUS FUN EVENTS SUCH AS OUR ADULTS WITH SMA SOCIALS AND VIRTUAL LOUNGES, GRANDPARENTS VIRTUAL SOCIAL AND A CELEBRATION CEREMONY TO END THE CONFERENCE. 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. 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. 8899259 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 59 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 KENNETH HOBBY PRESIDENT 70.00 X 264563 0 17160 JILL JARECKI CHIEF SCIENTIFIC OFFICER 60.00 X 199302 0 9311 MARY SCHROTH CHIEF MEDICAL OFFICER 60.00 X 229801 0 15213 MARLINE PAGAN VICE PRESIDENT, FINANCE & 60.00 X 141012 0 22394 COLLEEN MCCARTHY O'TOOLE VICE PRESIDENT, EVENTS & F 60.00 X 132186 0 21900 ROSANGEL CRUZ SR. DIRECTOR CLINICAL TRIALS 45.00 X 118524 0 10782 ERIN KELLY VP, DEVELOPMENT 45.00 X 129216 0 6805 TERESA STEWART DIRECTOR OF CLINICAL CARE OPS 45.00 X 120876 0 10820 1335480 0 114385 8 0 1 0 DRINKER BIDDLE AND REATH LLP ONE LOGAN SQUARE SUITE 2000 PHILADELPHIA PA 19103 LEGAL 139280 1 1167039 6972357 134206 8139396 ANNUAL CONFERENCE 900099 1640500 1640500 1640500 39285 39285 384676 380501 4175 4175 4175 2606084 1167039 377501 2228583 2228583 STORE MERCHANDISE 900099 23338 23338 SPEAKER HONORARIUMS 900099 8253 8253 31591 12083530 1672091 0 2272043 1891222 1891222 398392 398392 366900 366900 850281 602084 45582 202615 3192508 2156374 408771 627363 91973 61866 23486 6621 242064 165109 16742 60213 276071 188308 31196 56567 16494 14663 1831 25775 25775 9229 9229 541336 436586 78766 25984 395187 271574 34381 89232 425396 367629 16149 41618 331892 232324 23233 76335 224376 156457 26858 41061 178964 122072 20222 36670 820001 820001 1064 1064 503705 483566 5030 15109 33996 19815 8229 5952 BANK CHARGES, CREDIT CA 98047 25474 37545 35028 WEBSITE 95835 71887 4790 19158 STAFF DEVELOPMENT/TRAIN 38099 25619 2912 9568 PROMOTIONAL ITEMS 21219 18937 2282 49970 2400 28176 19394 11119996 8899259 852249 1368488 2976858 6593416 1405756 26 3725831 1374739 108319 90394 176850 836500 423669 337177 412831 1201609 1277887 507000 300823 23342 15402 10376286 10151974 2196037 688546 3055935 2582049 21000 769100 19508 13349 5271480 4074044 X 497975 1463867 4606831 4614063 5104806 6077930 10376286 10151974 963534 9590 0 X X 0 1 X 1 0 X 5374986 5818435 10804912 9307212 8139396 39444941 5374986 5818435 10804912 9307212 8139396 39444941 19956218 19488723 19250 86367 138587 45169 39285 328658 585000 15895 45183 31591 677669 40451268 28768520 0.48180 0.62010 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1 0 0 0 0 0 0 1 128675 128675 0 PART II-B, LINE 1 THE ORGANIZATION MAINTAINS ONE STAFF MEMBER THAT SPECIALIZES IN LOBBYING AND GOVERNMENT RELATIONS AND THIS STAFF MEMBER'S COMPENSATION INCLUDING TAXES AND BENEFITS, TOTALED $112,857 FOR THE FISCAL YEAR ENDED JUNE 30, 2020. 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. 1201609 66864 42101 32687 1277887 1110862 63994 53541 26788 1201609 1032313 48571 58042 28064 1110862 854008 116736 87854 26285 1032313 741466 112008 534 854008 0.02800 0.97200 0 0 795104 411800 383304 41396 11869 29527 412831 DEFERRED RENT 13349 13349 X 12103216 9590 19325 28915 12074301 9229 9229 12083530 11130092 19325 19325 11110767 9229 9229 11119996 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) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS IN THE REGION GRANTS 366900 0 0 0 0 0 0 366900 0 366900 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH 170000 WIRE TRANSFER EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH - CLINICAL TRIALS 196900 WIRE TRANSFER 0 0 0 0 0 0 PART III ACCOUNTING METHOD: 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 219951 188302 31649 32089 8684 DALLAS EVENING OF HOPE 162474 132844 29630 29108 3550 17002 156 3390698 845893 2544805 81813 19531 185724 3773123 1167039 2606084 143010 23081 211410 377501 2228583 1 TRUSTEES OF INDIANA UNIVERSITY PO BOX 78000 DETROIT MI 48278 356001673 501(C)(3) 150000 RESEARCH - BASIC TRUSTEES OF COLUMBIA UNIVERSITY - NYC 615 WEST 131ST STREET MC 8749 NEW YORK NY 10027 135598093 501(C)(3) 190000 RESEARCH - BASIC MEDICAL COLLEGE OF WISCONSIN 8701 WATERTOWN PLANK ROAD MILWAUKEE WI 53226 390806261 501(C)(3) 150000 RESEARCH - BASIC MAYO CLINIC JACKSONVILLE PO BOX 860334 MINNEAPOLIS MN 55486 593337028 501(C)(3) 150000 RESEARCH - BASIC UNIVERSITY OF PITTSBURGH 500 ROSS STREET PITTSBURGH PA 15262 250965591 501(C)(3) 190000 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) 100000 RESEARCH - DRUG DISCOVERY GILLETTE CHILDREN'S SPECIALTY HEALTHCARE 200 UNIVERSITY DRIVE AVENUE E ST PAUL MN 55101 363379150 501(C)(3) 30000 CARE CENTER NETWORK UNIVERSITY OF UTAH 201 PRESIDENT CIRCLE ROOM 406 SALT LAKE CITY UT 84112 876000525 501(C)(3) 30000 CARE CENTER NETWORK AR CHILDREN'S RESEARCH INSTITUTE 13 CHILDRENS WAY SLOT 842 LITTLE ROCK AR 72202 710694931 501(C)(3) 30000 CARE CENTER NETWORK YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 19683 CARE CENTER NETWORK UNIVERSITY OF ROCHESTER 601 ELMWOOD AVENUE BOX 673 ROCHESTER NY 14624 160743209 501(C)(3) 30000 CARE CENTER NETWORK CHILDREN'S NATIONAL MEDICAL CENTER 111 MICHIGAN AVE NW SUITE 5400 WASHINGTON DC 20010 521654453 501(C)(3) 30000 CARE CENTER NETWORK ADVOCATE HEALTH & HOSPITAL CORP 3075 HIGHLAND PARKWAY SUITE 600 DOWNERS GROVE IL 60515 362169147 501(C)(3) 30000 CARE CENTER NETWORK CURATORS OF THE UNIVESITY OF MISSOURI 118 UNIVERSITY HALL COLUMBIA MO 65211 436003859 501(C)(3) 30000 CARE CENTER NETWORK UNIVERSITY OF ALABAMA OF BIRMINGHAM 1720 2ND AVENUE SOUTH - AB1170 BIRMINGHAM AL 35294 636005396 501(C)(3) 30000 CARE CENTER NETWORK PHOENIX CHILDREN'S HOSPITAL 1919 E THOMAS ROAD PHOENIX AZ 85016 860422559 501(C)(3) 30000 CARE CENTER NETWORK CONNECTICUT CHILDREN'S MEDICAL CENTER 282 WASHINGTON STREET HARTFORD CT 06106 060646755 501(C)(3) 60000 CARE CENTER NETWORK VANDERBILT UNTIVERSITY MEDICAL CENTER PO BOX 121236 DALLAS TX 75312 352528741 501(C)(3) 60000 CARE CENTER NETWORK TRUSTEES OF COLUMBIA UNIVERSITY - NYC 154 HAVEN AVENUE NEW YORK NY 10032 135598093 501(C)(3) 60000 CARE CENTER NETWORK LELAND STANFORD JUNIOR UNIVERSITY 450 SERRA MALL STANFORD CA 94305 941156365 501(C)(3) 90000 CARE CENTER NETWORK BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 60000 CARE CENTER NETWORK KANSAS HEALTH AND ENVIRONMENTAL LABORATORIES BANK OF AMERICA NA PO BOX 3149 TOPEKA KS 66620 486029925 501(C)(3) 125000 NEWBORN SCREENING COLORADO DEPT OF PUBLIC HEALTH AND ENVIRONMENTAL 8100 LOWRY BLVD DENVER CO 80230 840644739 501(C)(3) 126252 NEWBORN SCREENING ARIZONA DEPARTMENT OF HEALTH SERVICES 150 N 18TH AVE STE 260 PHOENIX AZ 85007 866004791 501(C)(3) 100000 NEWBORN SCREENING STATE OF WASHINGTON DEPT OF HEALTH 1610 NE 150TH STREET SHORELINE WA 98155 911444603 501(C)(3) 67945 NEWBORN SCREENING 22 4 CHILD CARE PACKAGES 256 52971 FMV CARE PACKAGES FOR FAMILIES WITH RECENTLY DIAGNOSED CHILDREN ADULT CARE PACKAGES 380 192374 FMV CARE PACKAGES FOR ADULTS AND TEENS COVID SUPPORT PACKAGES 1499 106452 FMV CARE PACKAGES FOR SMA INDIVIDUALS COVID ASSISTANCE PROGRAM 846 46595 FMV ASSISTANCE FOR ESSENTIAL SUPPLIES 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. PART II, THE TOTAL OF GRANTS OF GRANTS TO ENTITIES WITHIN THE U.S DOES NOT AGREE TO THE SCHEDULE OF FUNCTION EXPENSES ON P. 10 BY $152,658 DUE TO THE RETURN OF UNUSED GRANT FUNDS OR CANCELLATION OF RESEARCH GRANTS PRMARILY REULTING FROM THE RESEARCHER LEAVING THE GRANTEE INSTITUTION. X X X 0 0 0 0 0 0 0 0 0 KENNETH HOBBY PRESIDENT 239563 0 25000 0 0 0 10173 0 6987 0 281723 0 0 0 JILL JARECKI CHIEF SCIENTIFIC OFFICER 194377 0 4925 0 0 0 7972 0 1339 0 208613 0 0 0 MARY SCHROTH CHIEF MEDICAL OFFICER 224126 0 5675 0 0 0 9298 0 5915 0 245014 0 0 0 MARLINE PAGAN VICE PRESIDENT, FINANCE & 137337 0 3675 0 0 0 6017 0 16377 0 163406 0 0 0 COLLEEN MCCARTHY O'TOOLE VICE PRESIDENT, EVENTS & F 123873 0 8313 0 0 0 5623 0 16277 0 154086 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 1 305 X 9650 X 6 56550 FAIR MARKET VALUE X EQUIPMENT 1 38000 FAIR MARKET VALUE X EVENT ADMISSION TICKETS 44 9413 FAIR MARKET VALUE X FOOD/WATER 23 6732 FAIR MARKET VALUE X JEWELRY 2 6005 FAIR MARKET VALUE X HOTEL/AIRFARE/SPA 13 5985 FAIR MARKET VALUE X PRINTING/SIGNAGE 2 1566 FAIR MARKET VALUE 0 1 1 PART I, LINE 32B: THE ORGANIZATION USES TD AMERITRADE TO RECEIVE AND SELL DONATED STOCK. 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 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 ORGANIZATION HAS A FINANCE/AUDIT COMMITTEE THAT REVIEWS THE AUDIT AND 990. A REQUEST FOR PROPOSALS WAS ISSUED IN A PRIOR YEAR AND NEW AUDITORS WERE SELECTED..