2021-11-22T13:26:06-06:00 2021-06-30 650715836 ZOMMA GROUP LLP 355 ALHAMBRA CIRCLE SUITE 1100 CORAL GABLES FL 33134 990 2020-07-01 201048322 COPD FOUNDATION INC COPD 8667312673 3300 PONCE DE LEON BLVD MIAMI FL 33134 SASHA LAVIN CFO 8667312673 2021-11-16 1 SASHA LAVIN 999009999 MARGARITA G LISKER CPA P00957338 3054448288 2021-11-16 2 AAL1 IAL1 2020 2022-09-23 18:48:47Z RUTH TAL-SINGER 3300 PONCE DE LEON BLVD MIAMI FL 33134 11911733 0 X WWW.COPDFOUNDATION.ORG X 2004 FL SEE SCHEDULE O.COPD'S MISSION IS TO SPEED INNOVATIONS WHICH WILL MAKE TREATMENT MORE EFFECTIVE AND AFFORDABLE, TO UNDERTAKE INITIATIVES THAT RESULT IN EXPANDED SERVICES FOR COPD PATIENTS, AND IMPROVE THE LIVES OF PATIENTS WITH COPD AND RELATED DISORDERS (THROUGH SCIENTIFIC RESEARCH, EDUCATION & AWARENESS) THAT WILL LEAD TO PREVENTION AND A STOP IN THE PROGRESSION OF COPD. THE ORGANIZATION'S ACTIVITIES FOCUS ON ACHIEVING THESE RESULTS THROUGH RESEARCH, EDUCATION AND ADVOCACY PROGRAMS THAT WILL LEAD TO PREVENTION AND SOMEDAY, A CURE FOR THE DISEASE. 13 13 33 301 0 0 8749406 8102975 93175 100400 215839 293300 375164 476980 9433584 8973655 789670 200596 0 0 3219372 3140171 0 0 797183 4885207 5175950 8894249 8516717 539335 456938 10533837 10791127 4002703 2814685 6531134 7976442 X THE COPD FOUNDATION WAS ESTABLISHED TO IMPROVE THE LIVES OF PEOPLE WITH COPD, BRONCHIECTASIS, AND NONTUBERCULOUS MYCOBACTERIAL (NTM) LUNG DISEASE THROUGH INITIATIVES THAT EXPAND SERVICES AND SPEED INNOVATIONS WHICH WILL MAKE TREATMENT MORE EFFECTIVE AND AFFORDABLE.WE DO THIS THROUGH SCIENTIFIC RESEARCH, EDUCATION, ADVOCACY, AND AWARENESS WITH THE GOAL OF DISEASE PREVENTION, SLOWED PROGRESSION, AND ULTIMATELY A CURE. 0 0 5334236 200596 1381758 RESEARCH & MEDICALTHE COPD360 UNIQUE RESEARCH AND THERAPEUTICS DEVELOPMENT PLATFORM INCLUDES MULTIPLE ELEMENTS SUCH AS TWO PATIENT REGISTRIES, COPD PATIENT POWERED RESEARCH NETWORK (COPD PPRN) AND THE BRONCHIECTASIS AND NTM RESEARCH REGISTRY (BRR), TWO INTERACTIVE MODERATED SOCIAL PLATFORMS ENGAGING OVER 60,000 INDIVIDUALS GLOBALLY, COPD360SOCIAL AND BRONCHANDNTM360SOCIAL, AND THE RECENTLY LAUNCHED DIGITAL AND THERAPEUTICS NETWORK, COPD360NET THAT SUPPORTS THE DEVELOPMENT AND ADOPTION OF NOVEL DIGITAL HEALTH TOOLS, MEDICAL DEVICES AND THERAPEUTICS THAT TREAT COPD, BRONCHIECTASIS, AND NONTUBERCULOUS MYCOBACTERIAL (NTM) LUNG DISEASE.IN ORDER TO ADVANCE THE DEVELOPMENT OF NEW MEDICINES, OR THE REPURPOSING OF EXISTING DRUGS, A NEW APPROACH IS NEEDED. IN ADDITION, COPD360NET IS FOCUSED ON IMPLEMENTATION SCIENCE FACILITATING DISCOVERY TO DELIVERY.COVID-19 RELATED RESEARCHAT THE ONSET OF THE COVID-19 PANDEMIC, WE FOCUSED ON LISTENING TO OUR COMMUNITY AND PROVIDING PEOPLE WITH ACCURATE, TIMELY, AND TRUSTED INFORMATION. WE LAUNCHED A SERIES OF GLOBAL SURVEYS TO CAPTURE THE EXPERIENCES OF HEALTH CARE PROVIDERS AND PEOPLE LIVING WITH COPD, BRONCHIECTASIS, ALPHA-1 ANTITRYPSIN DEFICIENCY, AND NTM LUNG INFECTIONS DURING THE COVID-19 PANDEMIC. AN IMPORTANT INSIGHT FROM THIS SURVEY SERIES WAS THE INCREASED IMPORTANCE AND RELIANCE ON TELEMEDICINE AND VIRTUAL PLATFORMS TO CONNECT WITH EACH OTHER, HEALTH CARE PROFESSIONALS, AND HEALTH AND WELLNESS PROGRAMS. BRONCHIECTASISANDNTM360 ADDRESSES THE UNMET NEEDS OF THE BRONCHIECTASIS AND NONTUBERCULOUS MYCOBACTERIA (NTM) COMMUNITIES. THE 360 FRAMEWORK OFFERS A GLOBAL ONLINE PLATFORM FOR COMMUNITY MEMBERS TO CONNECT AND INTERACT, EDUCATIONAL RESOURCES FOR PATIENTS, AND RESEARCH PROGRAMS MEANT TO ASSIST IN ACCELERATING THERAPEUTIC SOLUTIONS AND CURES FOR BOTH, BRONCHIECTASIS AND NTM. WE ARE FORTUNATE TO BE ABLE TO WORK COLLABORATIVELY AMONG ALL STAKEHOLDER GROUPS INCLUDING PATIENTS, CAREGIVERS, HEALTH CARE PROVIDERS, PHARMACEUTICAL COMPANIES, AND DEVICE MANUFACTURERS TO OFFER PROGRAMS CRITICAL TO OUR COMMON MISSION. 718447 PUBLIC & PROFESSIONAL EDUCATIONTHE COPD FOUNDATION ENSURES THAT EVIDENCE-BASED, CURRENT EDUCATION CONTINUES TO BE AVAILABLE TO ALL STAKEHOLDERS, INCLUDING PATIENTS, CAREGIVERS, AND HEALTH CARE PROVIDERS. WHILE COVID-19 WAS A PRIMARY FOCUS OF OUR FY21 EDUCATION, OUR COMMUNITY ALSO EXPRESSED THE NEED TO ADDRESS OTHER CRITICALLY IMPORTANT ISSUES, SUCH AS COPING WITH A DIAGNOSIS AND STRESS, NUTRITION, EXERCISE, DEVICE TECHNIQUE, AND MANY MORE. TO THAT END, WE BOTH UPDATED OUR EXISTING LIBRARY AND DEVELOPED NEW PRINT, VIDEO, ONLINE, AND PODCAST EDUCATIONAL CONTENT. WE ALSO BEGAN TRANSLATING THESE TO SPANISH TO IMPROVE THE ACCESSIBILITY OF OUR CONTENT. 477985 COMMUNITYTHE COPD360 COMMUNITY ENGAGEMENT COMMITTEE (COPD360CENCO), A DIVERSE PATIENTS AND CAREGIVERS COMMITTEE, WAS CREATED IN SEPTEMBER 2020 TO PROVIDE THE VOICE OF PATIENTS AND CAREGIVERS TO ALL OF THE COPD FOUNDATION'S EFFORTS, AND TO SUPPORT ITS INTERACTIONS WITH OTHER HEALTH CARE AND ADVOCACY ORGANIZATIONS. THE STRUCTURE FOR THE COPD360CENCO SUPPORTS THE DEVELOPMENT OF COPD360NET, WHILE ENHANCING THE COPD FOUNDATION'S REGULAR PRACTICE OF ENGAGING INDIVIDUALS WITH COPD, THEIR CAREGIVERS, AND FAMILIES. 388946 POLICY & ADVOCACYTHE COPD FOUNDATION COMMUNITY WORKS WITH LOCAL, STATE, AND FEDERAL POLICY MAKERS TO INCREASE RESEARCH FUNDING, IMPROVE CARE DELIVERY, PROTECT ACCESS TO TREATMENTS, AND CREATE POLICY THAT IMPROVES THE LIVES OF THOSE WITH COPD, BRONCHIECTASIS AND NONTUBERCULOUS MYCOBACTERIAL (NTM) LUNG DISEASE. THE COPD FOUNDATION IS FOCUSING ITS 2021 ADVOCACY AND PUBLIC POLICY ACTIVITIES ON THREE MAIN AREAS:1. ACCESS TO SAFE, EFFECTIVE AND AFFORDABLE OXYGEN THERAPY2. ACCESS TO EFFECTIVE, AFFORDABLE PULMONARY REHABILITATION (IN PERSON OR VIA TELEHEALTH)3. IMPROVEMENT IN THE REGULATORY PROCESS OF QUALIFYING DRUG DEVELOPMENT TOOLS TO SUPPORT THE DEVELOPMENT OF NEW TREATMENTS FOR CHRONIC LUNG CONDITIONSIN FY21, WE FOCUSED OUR ADVOCACY STRATEGY ON THREE KEY AREAS: IMPROVED ACCESS TO AND REIMBURSEMENT OF PULMONARY REHABILITATION, SAFE AND EFFICIENT DELIVERY OF OXYGEN THERAPY, AND IMPROVED ACCEPTANCE OF NEW DRUG DEVELOPMENT TOOLS. OUR VIRTUAL IMPACT 2020 ADVOCACY EVENT DREW MORE THAN 50 ADVOCATES FROM AROUND THE UNITED STATES TO PARTICIPATE IN WORKSHOPS AND CALLS WITH THEIR ELECTED REPRESENTATIVES. PUBLICATIONSBOYCE, DANIELLE M ET AL. "NEW ADOPTERS OF TELEMEDICINE DURING THE CORONAVIRUS-19 PANDEMIC IN RESPONDENTS TO AN ONLINE COMMUNITY SURVEY: THE CASE FOR ACCESS TO REMOTE MANAGEMENT TOOLS FOR INDIVIDUALS WITH CHRONIC OBSTRUCTIVE PULMONARY DISEASE." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.) VOL. 8,2 (2021): 213-218. DOI:10.15326/JCOPDF.2020.0181PRAVOSUD, VIRA ET AL. "SYMPTOM BURDEN AND MEDICATION USE AMONG PATIENTS WITH NONTUBERCULOUS MYCOBACTERIAL LUNG DISEASE." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.) VOL. 8,2 (2021): 243-254. DOI:10.15326/JCOPDF.2020.0184PASQUALE, CARA B ET AL. "SELF-REPORTED COPD MEDICATION USE AND ADHERENCE IN THE COPD FOUNDATION PATIENT- POWERED REGISTRY NETWORK." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.), 10.15326/JCOPDF.2021.0252. 8 SEP. 2021, DOI:10.15326/JCOPDF.2021.0252MCSHANE, PAMELA J ET AL. "GLOBAL ATTITUDES OF HEALTH CARE PROVIDERS ABOUT AEROSOLIZED AIRWAY CLEARANCE THERAPY IN BRONCHIECTASIS PATIENTS DURING THE CORONAVIRUS DISEASE 2019 PANDEMIC." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.) VOL. 8,3 (2021): 319-325. DOI:10.15326/JCOPDF.2021.0214CHOATE, RADMILA ET AL. "THE BURDEN OF COUGH AND PHLEGM IN PEOPLE WITH COPD: A COPD PATIENT-POWERED RESEARCH NETWORK STUDY." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.) VOL. 7,1 (2020): 49-59. DOI:10.15326/JCOPDF.7.1.2019.0146MCCREARY, GRETCHEN ET AL. "PATIENT-DRIVEN RESEARCH AGENDA: WHAT NEEDS TO BE STUDIED IN THOSE LIVING WITH COPD DURING THE CORONAVIRUS DISEASE 2019 PANDEMIC." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.) VOL. 8,3 (2021): 314-318. DOI:10.15326/JCOPDF.2021.0203TAL-SINGER, RUTH ET AL. "THE COPD FOUNDATION CORONAVIRUS DISEASE 2019 INTERNATIONAL MEDICAL EXPERTS SURVEY: RESULTS." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.) VOL. 7,3 (2020): 139-146. DOI:10.15326/JCOPDF.7.3.2020.0164 388946 6919614 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 1 0 0 0 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 56 0 1 33 1 0 0 0 0 0 1 1 0 0 0 0 X 13 13 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 FL X X THE ORGANIZATION 8667312673 3300 PONCE DE LEON BLVD MIAMI FL 33134 CORINNE COSTA DAVIS FORMER CEO 40.00 X 298211 0 7805 SARA D LATHAM FORMER CHIEF OPERATING OFFICER 40.00 X 242331 0 31558 VINCENT MALANGA CHIEF INFORMATION OFFICER 40.00 X 214720 0 14208 SASHA LAVIN CHIEF FINANCIAL OFFICER 40.00 X 152792 0 11382 ELISHA MALANGA CHIEF RESEARCH OFFICER 40.00 X 151659 0 28983 MARY A BYRNES FORMER CHIEF DEVELOPMENT OFFICER 40.00 X 146127 0 6860 CAROLL ADAMS VP CORPORATE RELATIONS 24.00 X 132200 0 0 RUTH TAL-SINGER PHD PRESIDENT & CHIEF SCIENTIFIC OFFICER 40.00 X 0 0 0 JAMES D CRAPO MD BOARD CHAIR & INTERIM CEO 10.00 X X 0 0 0 WAYNE E WITHERS JR VICE-CHAIR, TREASURER 2.00 X X 0 0 0 JEAN WRIGHT MD MBA DIRECTOR, SECRETARY 2.00 X X 0 0 0 BYRON M THOMASHOW MD CHIEF MEDICAL OFFICER 2.00 X X 0 0 0 RICHARD CASABURI PHD MD DIRECTOR 2.00 X 0 0 0 STEW COGAN ESQ DIRECTOR 2.00 X 0 0 0 LEONARD FROMER MD DIRECTOR 2.00 X 0 0 0 DONALD GRAY DIRECTOR 2.00 X 0 0 0 MEILAN K HAN MD MS DIRECTOR 2.00 X 0 0 0 MICHAEL P MAYER DIRECTOR 2.00 X 0 0 0 GERARD M TURINO MD DIRECTOR 2.00 X 0 0 0 ROBERT WISE MD DIRECTOR 2.00 X 0 0 0 HERB YARDLEY DIRECTOR 2.00 X 0 0 0 1338040 0 100796 7 1 1 0 NATIONAL JEWISH HEALTH 1400 JACKSON STREET DENVER CO 80206 CLINICAL STUDY CONTRACTOR 652344 UNIVERSITY OF NORTH CAROLINA 104 AIRPORT DRIVE STE 2200 CHAPEL HILL NC 27599 CLINICAL STUDY CONTRACTOR 525099 SCHEDULINGCOM 401 N MICHIGAN AVE STE 640 CHICAGO IL 60611 DATA COORDINATING CENTER 389253 UNIVERSITY OF MICHIGAN 1000 VICTORS WAY STE 1A ANN ARBOR MI 48108 CLINICAL STUDY CONTRACTOR 305878 EVIDERA INC 7101 WISCONSIN AVE STE 1400 BETHESDA MD 20814 DATA ANALYSIS CONTRACTOR 262996 13 163658 745127 7194190 8102975 PUBLICATION INCOME 511120 100400 100400 100400 104551 104551 2982451 2793702 188749 188749 188749 144376 163658 144376 0 MANAGEMENT FEES 541610 476980 476980 476980 8973655 0 0 870680 X 160596 160596 40000 40000 2612164 1713759 485652 412753 355000 294598 9557 50845 173007 130684 9880 32443 376459 146580 202837 27042 24100 24100 3994279 3738941 54497 200841 59949 56703 861 2385 99320 95767 1848 1705 30310 23567 3761 2982 844 844 2899 2899 7508 7508 31878 25292 3386 3200 LICENSES AND FEES 414832 368888 14018 31926 DUES & SUBSCRIPTIONS 95469 64946 3255 27268 TELEPHONE 19705 15593 2139 1973 PRINTING AND PUBLICATIO 12606 12606 5792 3251 721 1820 8516717 6919614 799920 797183 1801540 2474540 737484 401725 2951395 1672165 722571 596356 50531 30207 13537 20324 3859890 5188565 447420 437452 10533837 10791127 1025722 548534 2672111 2266151 304870 0 4002703 2814685 X 1678821 2899789 4852313 5076653 6531134 7976442 10533837 10791127 X 456938 697841 290529 X X 0 1 X 1 0 X 10023890 9064117 9371908 8749406 8102975 45312296 10023890 9064117 9371908 8749406 8102975 45312296 8999240 36313056 22857 63186 132557 134722 104551 457873 45770169 0.79340 0.66480 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 50531 30207 20324 20324 X 9366626 697841 697841 8668785 304870 304870 8973655 8516717 0 8516717 0 8516717 PART X, LINE 2: THE ORGANIZATION IS ORGANIZED AS A NOT-FOR-PROFIT ENTITY AND IS EXEMPT FROM INCOME TAXES UNDER SECTION 501(C) (3) OF THE INTERNAL REVENUE CODE. UNRELATED BUSINESS INCOME, OF WHICH THE ORGANIZATION HAD NONE FOR THE YEARS ENDED JUNE 30, 2021 AND 2020, WOULD BE SUBJECT TO FEDERAL INCOME TAXES. THE ORGANIZATION'S INFORMATION RETURNS FILED WITH THE INTERNAL REVENUE SERVICE HAVE NOT BEEN EXAMINED IN THE PAST. THE ORGANIZATION IS NOT AWARE OF ANY UNCERTAINTIES THAT COULD JEOPARDIZE ITS NOT-FOR-PROFIT STATUS. THEREFORE, NO PROVISION OR LIABILITY FOR INCOME TAXES IS DEEMED NECESSARY. THE ORGANIZATION FOLLOWS THE PROVISIONS OF UNCERTAIN TAX PROVISIONS ADDRESSED BY FAS ASC 740-10 ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES. THE ORGANIZATION HAS NO UNCERTAIN TAX POSITIONS AT JUNE 30, 2021 AND 2020, FOR WHICH THE ULTIMATE DEDUCTIBILITY IS HIGHLY CERTAIN BUT FOR WHICH THERE ARE UNCERTAINTY ABOUT THE TIMING OF SUCH DEDUCTIBILITY. THE ORGANIZATION RECOGNIZES INTEREST ACCRUED RELATED TO UNRECOGNIZED TAX BENEFITS IN INTEREST EXPENSE AND PENALTIES IN OPERATING EXPENSE. THE ORGANIZATION HAS DETERMINED THAT NO AMOUNT REQUIRED TO BE ACCRUED FOR TAXES OR RELATED PENALTIES AND INTEREST FOR ANY TAX POSITION TAKEN THROUGH JUNE 30, 2021 AND 2020. PART XI, LINE 4B - OTHER ADJUSTMENTS: PAYCHECK PROTECTION PROGRAM FUNDS 304,870. 0 0 0 0 0 0 0 0 0 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH 40000 WIRE 0 0 0 0 0 0 PART III ACCOUNTING METHOD: FUNDRAISING EVENT 308034 163658 144376 144376 308034 163658 144376 144376 144376 0 1 UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CHAPEL HILL NC 27599 566001393 501(C)(3) 123302 RESEARCH JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD N4327-B BALTIMORE MD 21211 520595110 501(C)(3) 26018 RESEARCH 2 PART I, LINE 2: THE ORGANIZATION HAS PROCEDURES IN PLACE TO REVIEW GRANTS AND ENSURE THAT THE AGREED UPON SCIENTIFIC DELIVERABLES ARE MET AND THAT THE FINANCIAL ASPECTS OF THE GRANT ARE EXECUTED IN ACCORDANCE WITH AGREEMENTS. SCIENTIFIC PROGRESS IS ASSESSED ACCORDING TO PROPOSED STUDY PROTOCOL AND PLANS. X X 1 0 0 0 0 0 0 0 0 CORINNE COSTA DAVIS FORMER CEO 298211 0 0 0 0 0 0 0 7805 0 306016 0 0 0 SARA D LATHAM FORMER CHIEF OPERATING OFFICER 242331 0 0 0 0 0 0 0 31558 0 273889 0 0 0 VINCENT MALANGA CHIEF INFORMATION OFFICER 214720 0 0 0 0 0 0 0 14208 0 228928 0 0 0 SASHA LAVIN CHIEF FINANCIAL OFFICER 152792 0 0 0 0 0 0 0 11382 0 164174 0 0 0 ELISHA MALANGA CHIEF RESEARCH OFFICER 151659 0 0 0 0 0 0 0 28983 0 180642 0 0 0 MARY A BYRNES FORMER CHIEF DEVELOPMENT OFFICER 146127 0 0 0 0 0 0 0 6860 0 152987 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B AFTER REVIEW BY THE CFO, THE DRAFT FORM 990 IS CIRCULATED TO MEMBERS OF MANAGEMENT FOR REVIEW AND COMMENT. THE FORM 990 IS THEN PROVIDED TO THE FOUNDATION'S BOARD OF DIRECTORS FOR REVIEW PRIOR TO FILING. FORM 990, PART VI, SECTION B, LINE 12C AT EACH BOARD MEETING THE CONFLICT OF INTEREST POLICY IS READ BEFORE THE CONDUCT OF ANY OTHER ITEM. WRITTEN CONFLICT OF INTEREST STATEMENTS ARE OBTAINED FROM ALL OFFICERS, BOARD MEMBERS, COMMITTEE MEMBERS, STAFF AND CONTRACTED PERSONNEL ANNUALLY. FAILURE TO FILE THE STATEMENT WILL RESULT IN THE PERSON BEING REMOVED FROM SERVICE ON ANY COMMITTEE FORM 990, PART VI, SECTION B, LINE 15 SALARIES FOR COPD FOUNDATION MANAGEMENT ARE DETERMINED BY ANNUAL SURVEYS OF COMPARABLE NOT-FOR-PROFIT ORANIZATIONS. FORM 990, PART VI, SECTION C, LINE 19 THE WEBSITE WWW.COPDFOUNDATION.ORG INCLUDES THE POSTING OF FINANCIAL STATEMENTS, FORM 990, ANNUAL REPORT, CONFLICT OF INTEREST POLICY AND WHISTLEBLOWER POLICY. FORM 990, PART IX, LINE 11G CONTRACT SERVICES: PROGRAM SERVICE EXPENSES 3,738,941. MANAGEMENT AND GENERAL EXPENSES 54,497. FUNDRAISING EXPENSES 200,841. TOTAL EXPENSES 3,994,279. FORM 990, PART XI, LINE 9: RECONCILING DIFFERENCE INSURANCE SETTLEMENT PROCEEDS 290,529. PART XII, LINE 2C EXPLANATION THERE WERE NO CHANGES FROM THE PRIOR YEAR.