2021-11-04T11:00:02-05:00 2021-06-30 362170602 WARADY & DAVIS LLP 1717 DEERFIELD RD SUITE 300S DEERFIELD IL 60015 990 2020-07-01 363320440 FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA FAMI 8477096318 925 BUSSE RD ELK GROVE VILLAGE IL 60007 KENNETH HOBBY PRESIDENT 8477096318 2021-10-19 1 KENNETH HOBBY 999009999 KOSTA G TCHOBANOV P01302744 8472679600 2 AAL1 IAL1 2020 2022-09-23 18:48:47Z CURE SMA KENNETH HOBBY 925 BUSSE RD ELK GROVE VILLAGE IL 60007 11070878 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 47 6400 0 0 8139396 8594517 1640500 1627325 43460 83339 2260174 111132 12083530 10416313 2656514 2609834 0 0 4652897 4578986 0 0 1778158 3810585 2878817 11119996 10067637 963534 348676 10151974 10212314 4074044 3593022 6077930 6619292 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 TO MULTIPLE APPROVED TREATMENTS, PROVIDE REAL IMPACT AND HOPE FOR FAMILIES AND PATIENTS IMPACTED BY THE DISEASE. THE CHARITY HAS INVESTED OVER $70 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 2034059 648665 24700 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.CURE SMA WORKS DIRECTLY WITH CLINICIANS, HEALTH CARE PROVIDERS, AND CAREGIVERS TO ENSURE THAT PATIENTS HAVE ACCESS TO THE BEST POSSIBLE CARE. 3281679 1508236 126488 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 ELEVEN ONGOING BASIC RESEARCH GRANTS, AS WELL AS TWO ONGOING DRUG DISCOVERY PROJECTS. 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 SEVERAL DOZEN DRUG PROGRAMS IN DEVELOPMENT, INCLUDING THREE 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. OVER THE PAST YEAR, 19 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. THE CLINICAL DATA REGISTRY HAS PROGRESSIVELY GROWN AND MORE THAN 550 PATIENTS ARE ENROLLED. ADDITIONAL DATA ELEMENTS HAVE BEEN ADDED TO INCLUDE GENETIC INFORMATION ADDITIONAL TREATMENT INFORMATION. CURE SMA COLLABORATES WITH STATE PUBLIC HEALTH LABS AND LEGISLATURES TO ADVOCATE FOR SMA NEWBORN SCREENING IMPLEMENTATION THROUGHOUT THE US. CURRENTLY 38 STATES SCREEN NEWBORNS FOR SMA FACILITATING EARLY PRESYMPTOMATIC TREATMENT. CURE SMA ALSO PROVIDES PATIENT AND HEALTHCARE PROFESSIONAL EDUCATION, WITH EXPERTISE FROM ITS MEDICAL ADVISORY COUNCIL. RESOURCES WERE ALSO DEVOTED TO MAINTAIN WEBSITE LISTINGS OF TREATMENT CENTERS THAT PROVIDE FDA-APPROVED SMA TREATMENTS. 2327472 452933 1635951 WE HOSTED OUR 2021 ANNUAL SMA CONFERENCE VIRTUALLY, WITH OVER 2,457 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, MANY VIRTUAL EVENTS FOR ALL ATTENDEES, 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.IN ADDITION, WE HOST ONE-DAY MINI CONFERENCES, WHICH GIVE FAMILIES, ADULTS WITH SPINAL MUSCULAR ATROPHY (SMA), AND CAREGIVERS AN OPPORTUNITY TO NETWORK AND LEARN FROM NATIONAL AND LOCAL EXPERTS ABOUT THE LATEST ADVANCES IN TREATMENT, CARE, ADVOCACY, AND SUPPORT. EACH SUMMIT OFFERS A UNIQUE AGENDA OF TOPICS RANGING FROM STANDARD OF CARE, RESEARCH AND CLINICAL TRIALS, NAVIGATING THE SPECIAL EDUCATION PROCESS, STRESS MANAGEMENT TECHNIQUES, AND MUCH MORE! PRESENTERS ARE EXPERTS IN THEIR FIELDS, WITH YEARS OF EXPERIENCE SPECIFIC TO SMA. AT THESE EVENTS, THERE IS AN OPPORTUNITY FOR ATTENDEES TO HAVE THEIR QUESTIONS ANSWERED BY THESE SPECIALISTS IN AN INTIMATE SETTING. 7643210 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 0 0 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 14 0 47 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 20 20 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 2.00 X 0 0 0 BRAD NUNEMAKER DIRECTOR 2.00 X 0 0 0 BRAIN SNYDER DIRECTOR 2.00 X 0 0 0 COREY BRAASTAD DIRECTOR 2.00 X 0 0 0 DOUGLAS KERR DIRECTOR (THROUGH 7/25/20) 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 2.00 X 0 0 0 KELLY JANKOWSKI DIRECTOR 2.00 X 0 0 0 MATT EVANS DIRECTOR 4.00 X 0 0 0 NICK FARRELL BOARD CHAIR 15.00 X X 0 0 0 PETER STATILE TREASURER 2.00 X X 0 0 0 RICHARD M RUBENSTEIN BOARD CHAIR (THROUGH 7/25/20) 15.00 X 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 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 KENNETH HOBBY PRESIDENT 70.00 X 327678 0 16980 JILL JARECKI CHIEF SCIENTIFIC OFFICER 60.00 X 237250 0 10655 MARY SCHROTH CHIEF MEDICAL OFFICER 60.00 X 267118 0 17077 COLLEEN MCCARTHY O'TOOLE VICE PRESIDENT, FAMILY SUPPORT 60.00 X 153136 0 22439 ERIN OGANESIAN VP, DEVELOPMENT 50.00 X 142727 0 12273 LESLIE HUMBEL SR. DIRECTOR MARKETING & COMMUNICATION 45.00 X 110315 0 4812 MARLINE PAGAN VICE PRESIDENT, FINANCE 60.00 X 156705 0 22733 MAYNARD FRIESZ VICE PRESIDENT, POLICY & ADVOCACY 50.00 X 116870 0 15141 1511799 0 122110 8 0 1 0 DRINKER BIDDLE AND REATH LLP ONE LOGAN SQUARE SUITE 2000 PHILADELPHIA PA 19103 LEGAL 208839 1 2474584 775125 5344808 59602 8594517 ANNUAL CONFERENCE 900099 1142325 1142325 SUMMIT OF STRENGTH SYMPOSIUMS 900099 485000 485000 1627325 29302 29302 637500 583463 54037 54037 54037 22420 2474584 71102 -48682 -48682 GRANT FORFEITURES 900099 126488 126488 STORE MERCHANDISE 900099 24700 24700 SPEAKER HONORARIUMS 900099 8626 8626 159814 10416313 1787139 0 34657 2156901 2156901 452933 452933 891276 629742 48578 212956 3086046 1756708 297548 1031790 96044 54113 9467 32464 241236 143020 21503 76713 264384 158313 23107 82964 1764 1764 25205 25205 10632 10632 617921 592681 8956 16284 337152 229146 32713 75293 415253 356079 17438 41736 288605 202024 20202 66379 238612 166384 28562 43666 12049 7215 1053 3781 168904 168904 9009 9009 450159 434958 3040 12161 32675 16605 7368 8702 WEBSITE 100672 75504 5034 20134 BANK CHARGES, CREDIT CA 78909 51255 27654 PROMOTIONAL ITEMS 29618 26665 2953 DUES AND SUBSCRIPTIONS/ 22100 22100 39578 15315 20882 3381 10067637 7643210 646269 1778158 6593416 6815576 26 1374739 1138834 176850 230474 1036660 653368 412831 383292 1277887 1478490 300823 150246 15402 15402 10151974 10212314 688546 549354 2582049 2064687 21000 13000 769100 959467 13349 6514 4074044 3593022 X 1463867 1805369 4614063 4813923 6077930 6619292 10151974 10212314 348676 192686 0 X X 0 1 X 1 0 X 5818435 10804912 9307212 8139396 7340383 41410338 5818435 10804912 9307212 8139396 7340383 41410338 17723042 23687296 86367 138587 45169 39285 29302 338710 585000 15895 45183 31591 33326 710995 42460043 15927288 0.55790 0.48180 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1 0 0 0 0 0 0 1 171471 171471 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 $151,447 FOR THE FISCAL YEAR ENDED JUNE 30, 2021. 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. 1277887 5475 265384 41181 35931 1471634 1201609 66864 42101 32687 1277887 1110862 63994 53541 26788 1201609 1032313 48571 58042 28064 1110862 854008 116736 87854 26285 1032313 0.00000 1.00000 0 0 975464 630200 345264 61196 23168 38028 383292 DEFERRED RENT 6514 6514 X 10793097 192686 194730 387416 10405681 10632 10632 10416313 10251735 194730 194730 10057005 10632 10632 10067637 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. WALK-N-ROLL 187024 187024 11859 VIRTUAL GALA 122599 122599 2750 17990 73 2187381 2164961 22420 314 38189 2497004 2474584 22420 314 2750 68038 71102 -48682 1 BRIGHAM AND WOMAN'S HOSPITAL BANK OF AMERICA NA PO BOX 3149 BOSTON MA 02241 042312909 501(C)(3) 75000 RESEARCH - DRUG DISCOVERY GILLETTE CHILDREN'S SPECIALTY HEALTHCARE 200 UNIVERSITY DRIVE AVENUE E ST PAUL MN 55101 363379150 501(C)(3) 59500 CARE CENTER NETWORK UNIVERSITY OF UTAH 201 PRESIDENT CIRCLE ROOM 406 SALT LAKE CITY UT 84112 876000525 501(C)(3) 42000 CARE CENTER NETWORK AR CHILDREN'S RESEARCH INSTITUTE 13 CHILDRENS WAY SLOT 842 LITTLE ROCK AR 72202 710694931 501(C)(3) 47000 CARE CENTER NETWORK YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 24500 CARE CENTER NETWORK UNIVERSITY OF ROCHESTER 601 ELMWOOD AVENUE BOX 673 ROCHESTER NY 14624 160743209 501(C)(3) 56000 CARE CENTER NETWORK CHILDREN'S NATIONAL MEDICAL CENTER 111 MICHIGAN AVE NW SUITE 5400 WASHINGTON DC 20010 521654453 501(C)(3) 30500 CARE CENTER NETWORK ADVOCATE HEALTH & HOSPITAL CORP 3075 HIGHLAND PARKWAY SUITE 600 DOWNERS GROVE IL 60515 362169147 501(C)(3) 25000 CARE CENTER NETWORK UNIVERSITY OF ALABAMA OF BIRMINGHAM 1720 2ND AVENUE SOUTH - AB1170 BIRMINGHAM AL 35294 636005396 501(C)(3) 57000 CARE CENTER NETWORK PHOENIX CHILDREN'S HOSPITAL 1919 E THOMAS ROAD PHOENIX AZ 85016 860422559 501(C)(3) 45500 CARE CENTER NETWORK CONNECTICUT CHILDREN'S MEDICAL CENTER 282 WASHINGTON STREET HARTFORD CT 06106 060646755 501(C)(3) 37000 CARE CENTER NETWORK VANDERBILT UNTIVERSITY MEDICAL CENTER PO BOX 121236 DALLAS TX 75312 352528741 501(C)(3) 30000 CARE CENTER NETWORK TRUSTEES OF COLUMBIA UNIVERSITY - NYC 154 HAVEN AVENUE NEW YORK NY 10032 135598093 501(C)(3) 33500 CARE CENTER NETWORK BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 69500 CARE CENTER NETWORK DUKE UNIVERSITY 2200 WEST MAIN ST SUITE 300 DURHAM NC 27705 560532129 501(C)(3) 52000 CARE CENTER NETWORK SEATTLE CHILDREN'S HOSPITAL 4800 SAND POINT WAY NE SEATTLE WA 98105 910564748 501(C)(3) 5470 CARE CENTER NETWORK UNIVERSITY OF TEXAS 1935 MEDICAL DISTRICT DRIVE DALLAS TX 75207 746000203 501(C)(3) 33195 CARE CENTER NETWORK CURATORS OF UNIVERSITY OF MISSOURI 118 UNIVERSITY HALL COLUMBIA MO 65211 436003859 501(C)(3) 1000 CARE CENTER NETWORK TRUSTEES OF COLUMBIA UNIVERSITY - NYC 154 HAVEN AVENUE NEW YORK NY 10032 135598093 501(C)(3) 100000 RESEARCH - CLINICAL TRIALS CHILDREN'S HOSPITAL OF PHILADELPHIA 34TH STREET CIVIC CENTER RD PHILADELPHIA PA 19104 521654453 501(C)(3) 100000 PNCR NETWORK UNIVERSITY OF ROCHESTER 601 ELMWOOD AVENUE BOX 673 ROCHESTER NY 14624 160743209 501(C)(3) 91138 PNCR NETWORK BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 250000 PNCR NETWORK TRUSTEES OF COLUMBIA UNIVERSITY - NYC 154 HAVEN AVENUE NEW YORK NY 10032 135598093 501(C)(3) 700000 PNCR NETWORK LELAND STANFORD JUNIOR UNIVERITY 450 SERRA MALL STANFORD CA 94305 941156365 501(C)(3) 200036 PNCR NETWORK 24 0 CHILD CARE PACKAGES 253 80653 FMV CARE PACKAGES FOR FAMILIES WITH RECENTLY DIAGNOSED CHILDREN ADULT CARE PACKAGES 2019 214274 FMV CARE PACKAGES FOR TEENS AND ADULTS INDEPENDENCE PACKAGES MEDICAL ALERT BRACELET 846 22956 FMV RESPONDER PHR(PERSONAL HEALTH RECORD) WITH MEDICAL ALERT BRACELET LIFEVAC SUPPORT PROGRAM 527 45000 FMV LIFEVAC HOME KIT NON-INVASIVE AIRWAY CLEARANCE DEVICE EQUIPMENT 327 7693 FMV NON RETURNABLE BACKPACK CARRIER DEVICE, TRICYCLE, ETC. COVID COMMUNITY PPE PACKAGES 1095 82357 FMV ASSISTANT 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 TO ENTITIES WITHIN THE U.S DOES NOT AGREE TO THE SCHEDULE OF FUNCTIONAL EXPENSES ON P. 10 BY $7,938 DUE TO DISCOUNTS ON LONG-TERM GRANTS PAYABLE. X X X 0 0 0 0 0 0 0 0 0 KENNETH HOBBY PRESIDENT 302678 0 25000 0 0 0 11285 0 5695 0 344658 0 0 0 MARY SCHROTH CHIEF MEDICAL OFFICER 255768 0 11350 0 0 0 10364 0 6713 0 284195 0 0 0 JILL JARECKI CHIEF SCIENTIFIC OFFICER 227400 0 9850 0 0 0 9152 0 1503 0 247905 0 0 0 MARLINE PAGAN VICE PRESIDENT, FINANCE 149355 0 7350 0 0 0 6476 0 16257 0 179438 0 0 0 COLLEEN MCCARTHY O'TOOLE VICE PRESIDENT, FAMILY SUPPORT 146511 0 6625 0 0 0 6233 0 16206 0 175575 0 0 0 ERIN OGANESIAN VP, DEVELOPMENT 136277 0 6450 0 0 0 5647 0 6626 0 155000 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 2 2768 FAIR MARKET VALUE X 7 14785 FAIR MARKET VALUE X EQUIPMENT 2 32500 FAIR MARKET VALUE X CLOTHING & HOUSEHOLD GOODS 9 4648 FAIR MARKET VALUE X JEWELRY 6 2275 FAIR MARKET VALUE X SUPPLIES 1 1236 FAIR MARKET VALUE X AUTOGRAPHED PHOTOS 3 650 FAIR MARKET VALUE X EVENT ADMISSION TICKETS 3 470 FAIR MARKET VALUE X FOOD & WATER 4 270 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 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.