2024-02-21T11:34:25-06:00 2023-06-30 650715836 ZOMMA GROUP LLP 355 ALHAMBRA CIRCLE SUITE 1100 CORAL GABLES FL 33134 990 2022-07-01 201048322 COPD FOUNDATION INC COPD 8667312673 3300 PONCE DE LEON BLVD MIAMI FL 33134 KALEO CURTIS CFO 8667312673 2024-02-13 1 KALEO CURTIS 999009999 1 MARGARITA G LISKER CPA P00957338 3054448288 2024-02-13 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z KALEO CURTIS 3300 PONCE DE LEON BLVD MIAMI FL 33134 11694671 0 X WWW.COPDFOUNDATION.ORG X 2004 FL SEE SCHEDULE O.THE COPD FOUNDATION IS A PATIENT-CENTERED ORGANIZATION COMMITTED TO PREVENTING COPD, BRONCHIECTASIS, AND NONTUBERCULOUS MYCOBACTERIAL (NTM) LUNG DISEASE, AND TO SEEKING CURES WHILE IMPROVING LIVES AND ADVOCATING FOR ALL AFFECTED. 16 16 40 333 0 0 7630964 7495120 102525 160312 260858 311291 0 0 7994347 7966723 40000 2500 0 0 3274953 3749762 0 0 747483 5199038 5896917 8513991 9649179 -519644 -1682456 9619205 8911710 2819631 3687084 6799574 5224626 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 4923787 2500 1213416 RESEARCH & MEDICALTHE COPD FOUNDATION CONTINUED THE DEVELOPMENT OF THE PATIENT INSPIRED VALIDATION OF OUTCOME TOOLS (PIVOT) PROGRAM. PIVOT WAS ESTABLISHED TO BE A DRIVING FORCE FOR INTEGRATING THE PATIENT AND THE PATIENT VOICE INTO OUTCOME MEASUREMENT IN CHRONIC LUNG DISEASE. WORKSTREAMS WERE ESTABLISHED TO FOCUS ON BOTH CT LUNG DENSITY AND EVALUATING RESPIRATORY SYMPTOMS (E-RS). THE E-RS DRUG MASTER FILE (DMF) SUBMISSION TO FDA WAS COMPLETED AS PLANNED IN MAY 2023. A POSTDOCTORAL RESEARCH FELLOW IN THE DEPARTMENT OF HEALTH RESEARCH METHODS, EVIDENCE, AND IMPACT (HEI) AT MCMASTER UNIVERSITY WAS ONBOARDED TO ASSIST WITH THE DEVELOPMENT OF PATIENT-CENTERED CONCEPTUAL FRAMEWORK IN COPD.THE COPD FOUNDATION PATIENT POWERED RESEARCH NETWORK (PPRN) WILL BE A NETWORK OF OVER 75,000 PATIENTS WITH COPD WHO HAVE AGREED TO SHARE THEIR HEALTH INFORMATION AND THE IMPACT THE DISEASE HAS ON THEIR LIVES. OPERATED AND GOVERNED BY GROUPS OF PATIENTS AND THEIR PARTNERS, THE INFORMATION WILL BE KEPT IN A SECURE DATABASE TO BE USED FOR RESEARCH - ULTIMATELY LEADING TO A DEEPER UNDERSTANDING OF THE DISEASE. THE COPD FOUNDATION EXPANDED THE REACH OF THE PPRN THROUGH THE EFFORTS OF PPRN GOVERNING BOARD WORKING GROUPS FOCUSED ON RECRUITMENT AND ENGAGEMENT. THE COPD FOUNDATION ONBOARDED A DEDICATED STAFF MEMBER TO SERVE AS A RESEARCH COORDINATOR AND ASSIST WITH THE GROWTH OF THE PPRN.THE COPD FOUNDATION EXECUTED, PARTICIPATED IN, AND OTHERWISE SUPPORTED THE PROGRESS OF SEVERAL RESEARCH STUDIES. THESE STUDIES FOCUS ON A WIDE RANGE OF TOPICS SUCH AS PATIENT SYMPTOM TREATMENT, VIRTUAL COPD MANAGEMENT TOOLS, PATIENT FEEDBACK ON SCREENING TOOLS, AND THERAPY DEVELOPMENT.BRONCHIECTASIS & NTM LUNG DISEASETHE COPD FOUNDATION PARTNERED WITH SEVERAL GLOBAL ORGANIZATIONS TO HOLD THE INAUGURAL WORLD BRONCHIECTASIS DAY AWARENESS CAMPAIGN. THE CAMPAIGN PRODUCED SEVERAL PIECES OF DIGITAL CONTENT FOR INTERNATIONAL DISTRIBUTION SUCH AS A PRESS RELEASE, EDUCATIONAL WEBINARS, "ALL ABOUT BRONCHIECTASIS" GUIDE AND QUIZ, ENGAGEMENT CAMPAIGNS, AND INTERACTIVE WEB PAGES. THE WORLD BRONCHIECTASIS DAY CAMPAIGN REACHED THOUSANDS OF INDIVIDUALS ACROSS THE WORLD. THE COPD FOUNDATION CONTINUED TO EXPAND ITS BRONCHIECTASIS RESEARCH REGISTRY (BRR). THE BRR IS A CONSOLIDATED DATABASE OF NON-CYSTIC FIBROSIS (NON-CF) BRONCHIECTASIS AND/OR NTM PATIENTS FROM MULTIPLE CLINICAL INSTITUTIONS ACROSS THE UNITED STATES. THE GOAL OF THE BRR IS TO SUPPORT COLLABORATIVE RESEARCH AND ASSIST IN THE PLANNING OF MULTI-CENTER CLINICAL TRIALS FOR THE TREATMENT OF NON-CF BRONCHIECTASIS AND/OR NTM LUNG DISEASE. NEW PARTNERS CONTINUE TO BE ONBOARDED INTO THE REGISTRY, WITH OVER 20 PARTNERS REPRESENTING SITES ACROSS THE UNITED STATES INVOLVED IN THE BRR BY THE END OF FY23. SEVEN ABSTRACTS RELATED TO THE BRR WERE SUBMITTED TO THE AMERICAN THORACIC SOCIETY CONFERENCE IN WASHINGTON, D.C. 959791 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 AROUND THE WORLD. THE COPD GUIDES FOR BETTER LIVING BOOKLET SERIES, PREVIOUSLY AVAILABLE IN ENGLISH AND SPANISH, WAS ADDITIONALLY TRANSLATED INTO RUSSIAN, FRENCH, CHINESE, ARABIC, AND ITALIAN. THE COPD FOUNDATION PROVIDED CONTINUING EDUCATION TO PRIMARY CARE PHYSICIANS TO SHARE KNOWLEDGE ON TREATING COPD IN PATIENTS IN PRIMARY CARE SETTINGS.THE COPD FOUNDATION ENSURED THAT PATIENTS STAY UP TO DATE ON BEST PRACTICES FOR MANAGING COPD BY UPDATING ITS POCKET CONSULTANT GUIDE TO UTILIZE THE MOST RECENT COPD TREATMENT AND MANAGEMENT GUIDANCE. THE COPD FOUNDATION PROVIDED FREE MONTHLY SUPPORT GROUP AND INFORMATIONAL SESSIONS TO SUPPLEMENTAL OXYGEN USERS TO LEARN ABOUT THEIR OXYGEN DEVICES, ASK QUESTIONS, AND COVER TOPICS SUCH AS CARE FOR AND TRAVELING WITH THE DEVICES.THE COPD FOUNDATION HARMONICAS FOR HEALTH PROGRAM ENCOURAGES PARTICIPANTS TO PERFORM FUN AND ENGAGING LUNG EXERCISES IN THE FORM OF HARMONICA PLAYING. MATERIALS FOR THE PROGRAM HAVE BEEN SHARED WITH OVER 20 WELLNESS CENTERS. THE COPD FOUNDATION EXPANDED THE REACH OF THE HARMONICAS FOR HEALTH PROGRAM TO THE PUBLIC VENUES OF MINOR LEAGUE BASEBALL GAMES, REACHING AUDIENCES OF THOUSANDS AND ENCOURAGING ATTENDEES TO GET CHECKED FOR COPD. 695228 COMMUNITYTHE COPD360 COMMUNITY ENGAGEMENT COMMITTEE (COPD360CENCO), A DIVERSE PATIENTS AND CAREGIVERS COMMITTEE, CONTINUED TO MEET MONTHLY TO PROVIDE THE VOICE OF PATIENTS AND CAREGIVERS TO ALL THE COPD FOUNDATION'S EFFORTS, AND TO SUPPORT ITS INTERACTIONS WITH OTHER HEALTH CARE AND ADVOCACY ORGANIZATIONS. PATIENT AND CAREGIVER INVOLVEMENT IN GOVERNANCE AND EDUCATION IS THE MODEL ON WHICH THE COPD FOUNDATION WAS ESTABLISHED. WITH THAT CENTRAL GOAL, THE COPD FOUNDATION HAS BUILT TRUST WITHIN ITS MEMBERSHIP AND RELATED STAKEHOLDER GROUPS.IN MARCH 2023, THE COPD FOUNDATION ONBOARDED A DEDICATED STAFF PERSON TO MANAGE THE CAPTAINS PROGRAM, WHICH SERVES AS THE ORGANIZATION'S VOLUNTEER FORCE. BY JUNE 2023, MEMBERSHIP IN THE CAPTAINS PROGRAM HAD INCREASED BY 11%. CAPTAINS SPREAD COPD AWARENESS IN THEIR STATE AND LOCAL AREAS, MENTOR FELLOW COPD COMMUNITY MEMBERS, AND PARTICIPATE IN GRASSROOTS ADVOCACY AND COMMUNITY BUILDING ACTIVITIES FOCUSED ON HEALTH POLICY ISSUES THAT ARE IMPORTANT TO THOSE WHO HAVE COPD AND OTHER CHRONIC LUNG DISEASES.THE COPD FOUNDATION CONTINUES TO SUPPORT PATIENT WELLBEING BY PROVIDING FREE MONTHLY SUPPORT GROUPS FOR PATIENTS AND CAREGIVERS. SUPPORT GROUPS ARE AVAILABLE FOR BOTH PATIENTS WITH COPD AND PATIENTS WITH BRONCHIECTASIS AND (NONTUBERCULOUS MYCOBACTERIAL) NTM LUNG DISEASE. DOZENS OF PATIENTS ATTEND THESE MEETINGS EACH MONTH TO DISCUSS THEIR EXPERIENCES AND LEARN ABOUT TOPICS SUCH AS STAYING HEALTHY DURING THE HOLIDAYS AND TALKING TO THEIR HEALTH CARE PROVIDERS ABOUT THEIR SPECIFIC ISSUES AND SYMPTOMS. 278440 ADVOCACY & PUBLIC POLICYTHE 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 CENTERED ITS FY23 POLICY EFFORTS ON THE FOLLOWING PRIORITIES:1. INCREASED INVESTMENT IN RESEARCH AND DEVELOPMENT OF TREATMENTS FOR COPD AND CHRONIC LUNG DISEASE2. IMPROVEMENT IN THE REGULATORY PROCESS FOR ACCEPTANCE OF SCIENTIFICALLY VALIDATED DRUG DEVELOPMENT TOOLS TO SUPPORT THE ADVANCEMENT OF NEW TREATMENTS FOR CHRONIC LUNG CONDITIONS3. ACCESS TO SAFE, EFFECTIVE, AND AFFORDABLE OXYGEN THERAPY4. ACCESS TO EFFECTIVE, AFFORDABLE, AND EQUITABLE PULMONARY REHABILITATION (IN-PERSON AND VIA TELEHEALTH)5. STRONGER REGULATION OF NICOTINE AND TOBACCO PRODUCTSPROGRESS HAS BEEN MADE ON ALL POLICY PRIORITIES AS A DIRECT RESULT OF COPD FOUNDATION ADVOCACY EFFORTS. THIS INCLUDES THE PROGRESSION OF PULMONARY REHABILITATION LEGISLATION THROUGH CONGRESS, IDENTIFICATION OF SUPPORTERS FOR SUPPLEMENTAL OXYGEN LEGISLATION, AND THE INCLUSION OF THE COPD FOUNDATION'S REQUESTED REPORT LANGUAGE IN THE DRAFT BUDGETS OF BOTH THE U.S. HOUSE OF REPRESENTATIVES AND SENATE FOR FY24. 278440 6857246 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 53 0 1 40 1 0 0 0 0 0 0 0 0 0 0 X 16 16 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 JAMES D CRAPO MD BOARD CHAIR 10.00 X X 0 0 0 WAYNE E WITHERS JR VICE-CHAIR, TREASURER 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 MARK DRANSFIELD MD DIRECTOR 2.00 X 0 0 0 MIKE ROGERS DIRECTOR 2.00 X 0 0 0 HERB YARDLEY DIRECTOR 2.00 X 0 0 0 VALERIE CHANG ESQ DIRECTOR 2.00 X 0 0 0 MARK METERSKY MC FCCP DIRECTOR 2.00 X 0 0 0 WILLIAM PILKINGTON DPA MPA MA DIRECTOR 2.00 X 0 0 0 CINDY PRAEGER EMP DIRECTOR 2.00 X 0 0 0 RISA STACK PHD DIRECTOR 2.00 X 0 0 0 GERARD M TURINO MD EMERITI MEMBER 2.00 X 0 0 0 ROBERT WISE MD EMERITI MEMBER 2.00 X 0 0 0 GRACE ANNE DORNEY KOPPEL JD EMERITI MEMBER 2.00 X 0 0 0 VINCENT MALANGA EVP, CHIEF INFORMATION OFFICER 40.00 X 230745 0 17634 ELISHA MALANGA CORPORATE RELATIONS OFFICER 40.00 X 169424 0 35697 KALEO CURTIS CHIEF FINANCIAL OFFICER 40.00 X 147462 0 32217 JEAN WRIGHT MD MBA CHIEF EXECUTIVE OFFICER 40.00 X 16149 0 0 SASHA LAVIN SR DIRECTOR OF FINANCE 40.00 X 160064 0 26364 KRISTEN WILLARD EVP, PUBLIC & PROFESSIONAL EDUCATION 40.00 X 128708 0 15483 CHRISTINE NOVAK MICKA SR DIRECTOR OF DEVELOPMENT 40.00 X 136088 0 28347 CAROLYN JOHNSON SR DIRECTOR OF COMMUNICATIONS & MARKETING 40.00 X 131884 0 0 PETER AMARI VP, INFORMATION TECHNOLOGY & DESIGN 40.00 X 112348 0 0 RUTH TAL-SINGER FORMER PRESIDENT & CEO 0.00 X 275000 0 0 1507872 0 155742 9 1 1 0 BEM CONSULTING LLC 45 DIAMOND ROACK ROAD PHOENIXVILLE PA 19460 CONTRACTOR 188333 JCYATES CONSULTING LLC 28 BENCHMARK PITTSBORO NC 27312 CONTRACTOR 182081 PERL PLLC 350 E SHORT STREET UNIT 411 LEXINGTON KY 40507 CONTRACTOR 141500 ALAN L HAMILTON CONSULTING INC 2 FENWICK PLACE WATERDOWN ONTARIO CA L8D 0P5 CONTRACTOR 116250 LYNN SOBEL & ASSOCIATES 28 BEECHDALE ROAD DOBBS FERRY NY 10522 CONTRACTOR 110000 6 29337 7465783 7495120 PUBLICATION INCOME 513190 160312 160312 160312 193658 193658 3845581 3727948 117633 117633 117633 7966723 0 0 471603 X 2500 2500 2962995 1683092 841195 438708 552152 284673 161598 105881 234615 136007 65505 33103 106014 6028 98794 1192 4717924 4106216 541060 70648 38111 33104 1930 3077 89288 52485 29842 6961 25402 25402 96949 89793 6809 347 112256 87947 24309 6930 6930 55019 5627 47595 1797 LICENSES AND FEES 494139 316369 151656 26114 DUES & SUBSCRIPTIONS 86115 19647 38810 27658 PRINTING AND PUBLICATIO 32595 26307 3530 2758 TELEPHONE 21389 19 21370 14786 7432 2424 4930 9649179 6857246 2044450 747483 1784276 1793636 197804 1527199 1693965 735281 527014 409885 47300 29691 22942 17609 5000792 4042892 392412 385208 9619205 8911710 903127 1057638 1916504 2629446 2819631 3687084 X 1898654 1158628 4900920 4065998 6799574 5224626 9619205 8911710 -1682456 107508 0 X X 0 1 X 1 0 X 9371908 8749406 8102975 7630964 7495120 41350373 9371908 8749406 8102975 7630964 7495120 41350373 1852919 39497454 132557 134722 104551 142019 513849 41864222 0.94350 0.84680 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 47300 29691 17609 17609 X 7655432 0 7655432 311291 311291 7966723 9649179 0 9649179 0 9649179 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, 2023 AND 2022, 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, 2023 AND 2022, 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, 2023 AND 2022. PART XI, LINE 4B - OTHER ADJUSTMENTS: INTEREST INCOME 39,040. DIVIDENDS 154,618. REALIZED GAIN ON SALES 117,633. X X 0 0 0 0 0 0 0 0 0 RUTH TAL-SINGER FORMER PRESIDENT & CEO 275000 0 0 0 0 0 0 0 0 0 275000 0 0 0 VINCENT MALANGA EVP, CHIEF INFORMATION OFFICER 230745 0 0 0 0 0 0 0 17634 0 248379 0 0 0 ELISHA MALANGA CORPORATE RELATIONS OFFICER 169424 0 0 0 0 0 0 0 35697 0 205121 0 0 0 SASHA LAVIN SR DIRECTOR OF FINANCE 160064 0 0 0 0 0 0 0 26364 0 186428 0 0 0 KALEO CURTIS CHIEF FINANCIAL OFFICER 147462 0 0 0 0 0 0 0 32217 0 179679 0 0 0 CHRISTINE NOVAK MICKA SR DIRECTOR OF DEVELOPMENT 136088 0 0 0 0 0 0 0 28347 0 164435 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 4,106,216. MANAGEMENT AND GENERAL EXPENSES 541,060. FUNDRAISING EXPENSES 70,648. TOTAL EXPENSES 4,717,924. FORM 990, PART XII, LINE 2C: THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.