2025-11-12T11:41:03-06:00 2025-06-30 362170602 WARADY & DAVIS LLP 1717 DEERFIELD RD SUITE 300S DEERFIELD IL 60015 990 2024-07-01 363320440 FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA FAMI 8477096318 50 E COMMERCE DR 90 SCHAUMBURG IL 60173 KENNETH HOBBY PRESIDENT 8477096318 2025-11-12 1 1 KOSTA G TCHOBANOV P01302744 8472679600 2025-11-11 2024 2025-03-06 01:10:19Z X CURE SMA KENNETH HOBBY 50 E COMMERCE DR 90 SCHAUMBURG IL 60173 16238049 0 X WWW.CURESMA.ORG X 1984 IL TO DRIVE RESEARCH FOR TREATMENTS AND A CURE FOR SMA, AND TO SUPPORT AND EMPOWER EVERYONE IMPACTED BY SMA TODAY. 24 24 53 6800 0 0 7517231 7673243 6958513 6912298 133015 209381 176476 419048 14785235 15213970 2062306 2564862 0 0 5757663 5683143 0 0 1878580 7801896 5771394 15621865 14019399 -836630 1194571 10703968 10645251 4582639 3222762 6121329 7422489 X OUR MISSION IS TO DRIVE RESEARCH FOR TREATMENTS AND A CURE FOR SMA, AND TO SUPPORT AND EMPOWER EVERYONE IMPACTED BY SMA TODAY. 0 0 4835026 196619 245468 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 5416203 2368243 1650318 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, 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 FIVE IN CLINICAL TRIALS. CURRENTLY, TWO INVESTIGATIONAL DRUGS ARE AWAITING FDA APPROVAL.CURE SMA HAVE THREE PRIMARY DATABASES FOR DATA COLLECTION: A PATIENT-REPORTED DATABASE WITH DATA FROM OVER 11,000 IMPACTED INDIVIDUALS WORLDWIDE THAT ALSO INCORPORATES LONGITUDINAL DATA FROM OUR ANNUAL COMMUNITY UPDATE SURVEY; THE SMA CLINICAL DATA REGISTRY (CDR) THAT CONTAINS ELECTRONIC MEDICAL RECORD (EMR) SOURCED DATA FROM U.S. BASED SMA CARE CENTER NETWORK SITES; AND THE NEWBORN SCREENING REGISTRY WITH DATA FROM PARENTS OF BABIES WITH SMA THAT WERE IDENTIFIED THROUGH STATEWIDE SMA NEWBORN SCREENING. 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 2024 REPORT AVAILABLE ON OUR WEBSITE. DATA COLLECTED IS ALSO SHARED IN PEER-REVIEWED LITERATURE. CURE SMA PUBLISHED "SMA COMMUNITY PRIORITIES FOR FUTURE DRUG THERAPIES: CROSS-SECTIONAL SURVEY FINDING REPRESENTING 410 ADULTS WITH SMA" IN NEUROLOGY AND THERAPY IN JUNE 2025. IN ADDITION, CURE SMA SUPPORTS THE SMA INDUSTRY COLLABORATION. ESTABLISHED IN 2016, THE COLLABORATION IS A MULTI-FACETED PARTNERSHIP THAT BRINGS TOGETHER PHARMACEUTICAL COMPANIES, CURE SMA, AND OTHER NONPROFIT ORGANIZATIONS TO SHARE INFORMATION, IDEAS, AND DATA. THE SMA INDUSTRY COLLABORATION WORKS TOGETHER TO ADDRESS SCIENTIFIC, CLINICAL, AND REGULATORY TOPICS THAT ARE CRITICAL TO ADVANCING DRUG DEVELOPMENT IN SMA AND WILL BENEFIT THE BROADER SMA COMMUNITY. CURE SMA CO-CREATED A NEW HEALTHCARE PROVIDER ENDURING CONTINUING MEDICAL EDUCATION PROGRAM IN ADDITION TO THE IN-PERSON CURE SMA CLINICAL CARE SESSION OFFERED IN JUNE 2025. RESOURCES WERE ALSO DEVOTED TO MAINTAINING WEBSITE LISTINGS OF SMA NEWBORN SCREENING REFERRAL CENTERS AND TREATMENT CENTERS THAT PROVIDE FDA-APPROVED SMA TREATMENTS. 588940 5330919 WE HOSTED THE 2025 ANNUAL SMA CONFERENCE IN ANAHEIM, CA WITH OVER 2,739 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 AND CLINICAL CARE CONFERENCE CREATES OPEN COMMUNICATION OF EARLY, UNPUBLISHED SCIENTIFIC DATA, ACCELERATING THE PACE OF RESEARCH. THE MEETING ALSO FURTHERS RESEARCH BY BUILDING PRODUCTIVE COLLABORATIONSINCLUDING 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. 10840169 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 33 0 53 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 24 24 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 50 E COMMERCE DR 90 SCHAUMBURG IL 60173 ROBERT GRAHAM DIRECTOR 2.00 X 0 0 0 PETER STATILE DIRECTOR 2.00 X 0 0 0 MARK MOORE DIRECTOR 2.00 X 0 0 0 MARC GINSKY DIRECTOR 2.00 X 0 0 0 KAREN MCROY-NEGRIN DIRECTOR 2.00 X 0 0 0 BAKRI ELSHEIKH DIRECTOR 2.00 X 0 0 0 JOE WISEMAN DIRECTOR 2.00 X 0 0 0 ROB LOCKWOOD DIRECTOR 2.00 X 0 0 0 KELLY JANKOWSKI DIRECTOR 2.00 X 0 0 0 AMY MEDINA DIRECTOR 2.00 X 0 0 0 GILLIAN MULLINS DIRECTOR (THROUGH 12/31/24) 2.00 X 0 0 0 EDMUND LEE DIRECTOR (THROUGH 12/31/24) 2.00 X 0 0 0 DIANA CASTRO DIRECTOR 2.00 X 0 0 0 BRIAN SNYDER DIRECTOR 2.00 X 0 0 0 BRIANNA GROSS DIRECTOR 2.00 X 0 0 0 JACLYN GREENWOOD DIRECTOR 2.00 X 0 0 0 COREY BRAASTAD DIRECTOR 2.00 X 0 0 0 ALLYSON HENKEL DIRECTOR 2.00 X 0 0 0 COLLIN POLLOCK DIRECTOR (START 4/26/25) 2.00 X 0 0 0 RACHEL BROWN DIRECTOR (START 4/26/25) 2.00 X 0 0 0 TYLER DUKES DIRECTOR (START 4/26/25) 2.00 X 0 0 0 KALEEN ROBINSON DIRECTOR 2.00 X 0 0 0 SPENCER PERLMAN DIRECTOR 2.00 X 0 0 0 NICK FARRELL BOARD CHAIR 5.00 X X 0 0 0 BRADLEY A NUNEMAKER TREASURER & VICE CHAIR 5.00 X X 0 0 0 SHANNON ZERZAN DIRECTOR 5.00 X 0 0 0 JOHN WEBER DIRECTOR (START 10/1/2024) 2.00 X 0 0 0 KENNETH HOBBY PRESIDENT 70.00 X 329195 0 19611 JAMIE GIBSON CHIEF DEVELOPMENT OFFICER 60.00 X 266038 0 28541 MARY SCHROTH CHIEF MEDICAL OFFICER (THROUGH 3/31/25) 60.00 X 218342 0 10202 MARLINE PAGAN CHIEF OPERATING OFFICER 60.00 X 208905 0 30552 JESSE AYNES VICE PRESIDENT OF DEVELOPMENT 50.00 X 135299 0 9819 MARY CURRY VICE PRESIDENT, CLINICAL RESEARCH & CARE 50.00 X 138474 0 20241 MAYNARD FRIESZ VICE PRESIDENT, POLICY 50.00 X 149595 0 13548 JACKIE GLASCOCK VICE PRESIDENT OF RESEARCH 50.00 X 146346 0 7311 COLLEEN MCCARTHY O'TOOLE SR VICE PRESIDENT, COMMUNI 60.00 X 175435 0 27061 1767629 0 166886 16 0 1 0 0 2630216 5043027 126484 7673243 ANNUAL CONFERENCE 900099 4504249 4504249 INDUSTRY SPONSORED RESEARCH 900099 1593049 1593049 SUMMIT OF STRENGTH SYMPOSIUMS 900099 815000 815000 6912298 152824 152824 476058 419501 56557 56557 56557 709219 2630216 604578 104641 104641 HOTEL COMMISSIONS 900099 159514 159514 LEASE CANCELLATION 900099 112500 112500 STORE MERCHANDISE 900099 24454 24454 17939 17939 314407 15213970 7226705 0 314022 1802574 1802574 196619 196619 565669 565669 1168801 541662 188361 438778 3747629 2323971 552700 870958 98683 62575 14285 21823 319066 194954 45848 78264 348964 204319 52414 92231 4425 4425 36050 36050 18750 18750 550314 527293 5371 17650 33092 23820 4806 4466 384534 324550 18238 41746 451247 315874 31586 103787 123018 72028 18476 32514 204728 119869 30749 54110 3412351 3268889 115465 27997 135755 120930 5372 9453 43929 19130 16163 8636 BANK CHARGES, CREDIT CA 127631 87298 40333 WEBSITE 114664 85998 5733 22933 PROMOTIONAL ITEMS 41402 37245 4157 DUES AND SUBSCRIPTIONS/ 28910 11475 10338 7097 60594 20725 34065 5804 14019399 10840169 1300650 1878580 3808783 4762767 4000444 3183431 223881 226893 855101 796016 161593 59085 2291309 2391493 33647 1588 184311 19994 10703968 10645251 2962429 1842564 1245367 1201221 374843 178977 4582639 3222762 X 1424129 2609833 4697200 4812656 6121329 7422489 10703968 10645251 1194571 106589 0 X X 0 1 X 1 0 X 7340383 9516614 9356093 7517231 7673243 41403564 7340383 9516614 9356093 7517231 7673243 41403564 17150594 24252970 29302 50353 87007 118983 152824 438469 33326 139055 87572 65715 314407 640075 42482108 28365428 0.57090 0.55780 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1 0 0 0 0 0 0 1 308613 308613 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 $269,947.70 FOR THE FISCAL YEAR ENDED JUNE 30, 2025. 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. 2289032 3328 218282 126088 2384554 1851892 214162 222978 2289032 1411074 315342 125476 1851892 1471634 137735 -198295 1411074 1277887 5475 265384 41181 35931 1471634 0.00000 0.89837 0.10163 0 0 815102 756017 59085 39999 39999 0 59085 GRANTS PAYABLE, LONG-TERM 178977 178977 X 15407549 106589 105740 212329 15195220 18750 18750 15213970 14106389 105740 105740 14000649 18750 18750 14019399 PART V, LINE 4: THE ENDOWMENT FUND IS INTENDED FOR THE PURPOSE OF LAUNCHING NEW AND MAINTAINING CURRENT TREATMENT AND CARE CENTERS. TO THE EXTENT THAT THE ORGANIZATION HAS ESTABLISHED ALL THE TREATMENT AND CARE CENTERS DEEMED APPROPRIATE BY ITS BOARD OF DIRECTORS, ANY EXCESS ANNUAL FUNDS SHALL THEN BE ALLOCATED TO FUND A PORTION OF THE DIRECT COSTS OF OPERATING ALL TREATMENT AND 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.LIST 59 _ 2AKOTLOVA - 10/23/24 09:18PM WORKSHEET FORM 990 - SCH F (PART I) _ 1372 515669 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS IN THE REGION. GRANTS 50000 0 0 0 0 0 0 565669 0 565669 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM BASIC RESEARCH 147836 WIRE TRANSFER 0 CASH VALUE EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM CLINICAL TRIALS 364960 WIRE TRANSFER 0 CASH VALUE EAST ASIA AND THE PACIFIC BASIC RESEARCH 50000 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. CURE FOR CASEY 265339 256088 9251 3259 9251 3250 40449 HOPE ON THE HILL 151795 116568 35227 10461 35227 682 12906 48 2922301 2257560 664741 77180 38242 109076 27165 237430 3339435 2630216 709219 80439 48703 153554 31097 290785 604578 104641 1 UNIVERSITY OF ROCHESTER 601 ELMWOOD AVENUE BOX 673 ROCHESTER NY 14624 160743209 501(C)(3) 230000 0 PNCR NETWORK TRUSTEES OF COLUMBIA UNIVERSITY - NYC 154 HAVEN AVENUE NEW YORK NY 10032 135598093 501(C)(3) 306885 0 PNCR NETWORK & BASIC RESEARCH BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 346620 0 PNCR NETWORK & BASIC RESEARCH LELAND STANFORD JUNIOR UNIVERSITY 450 SERRA MALL STANFORD CA 94305 941156365 501(C)(3) 252500 0 PNCR NETWORK CHILDREN'S HOSPITAL OF PHILADELPHIA 34TH STREET CIVIC CENTER RD PHILADELPHIA PA 19104 521654453 501(C)(3) 164300 0 PNCR NETWORK JOHN HOPKINS UNIVERSITY BANK OF AMERICA NA 12529 COLLECTIONS CENTER DRIVE CHICAGO IL 60693 520595110 501(C)(3) 149695 0 BASIC RESEARCH MEDICAL COLLEGE OF WISCONSIN 8701 WATERTOWN PLANK RD MILWAUKEE WI 53226 390806261 501(C)(3) 915 0 BASIC RESEARCH CASE WESTERN UNIVERSITY 10900 EUCLID AVE NORD HALL SUITE 615 CLEVELAND OH 44106 341018992 501(C)(3) 44169 0 BASIC RESEARCH ANN & ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO 225 E CHICAGO AVE BOX 282 CHICAGO IL 60611 362170833 501(C)(3) 307490 0 PNCR NETWORK & BASIC RESEARCH 9 0 CHILD CARE PACKAGES 155 32371 FMV CARE PACKAGES FOR FAMILIES WITH RECENTLY DIAGNOSED CHILDREN ADULT CARE PACKAGES 108 6897 FMV CARE PACKAGES FOR TEENS AND ADULTS INDEPENDENCE PACKAGES EQUIPMENT 9 54399 FMV CAR BED WITH MODIFIED VEST MEDICAL ID BRACELET SUPPORT PROGRAM 13 0 FMV MEDICAL ALERT BRACELET AND KEYCHAIN LIFEVAC CHOKING AID DEVICE SUPPORT PROGRAM 83 4680 FMV CHOKING AID DEVICE FOR ANY INDIVIDUAL WITH SMA COMMUNITY SUPPORT PACKAGE 337 98272 FMV TRAVEL PACKAGES FOR ADULTS 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 329195 0 0 0 0 0 12244 0 7367 0 348806 0 0 0 JAMIE GIBSON CHIEF DEVELOPMENT OFFICER 266038 0 0 0 0 0 9619 0 18922 0 294579 0 0 0 MARLINE PAGAN CHIEF OPERATING OFFICER 208905 0 0 0 0 0 9202 0 21350 0 239457 0 0 0 MARY SCHROTH CHIEF MEDICAL OFFICER (THROUGH 3/31/ 218342 0 0 0 0 0 8841 0 1361 0 228544 0 0 0 COLLEEN MCCARTHY O'TOOLE SR VICE PRESIDENT, COMMUNI 175435 0 0 0 0 0 5746 0 21315 0 202496 0 0 0 MAYNARD FRIESZ VICE PRESIDENT, POLICY 149595 0 0 0 0 0 5879 0 7669 0 163143 0 0 0 MARY CURRY VICE PRESIDENT, CLINICAL RESEARCH & 138474 0 0 0 0 0 6111 0 14130 0 158715 0 0 0 JACKIE GLASCOCK VICE PRESIDENT OF RESEARCH 146346 0 0 0 0 0 6067 0 1244 0 153657 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 3 4975 FAIR MARKET VALUE X DONATED AUCTION ITEMS 199 121509 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.