Form 990 for tax year 2023

Totals

Total revenue

$10,974,474

Total expenses

$10,855,388

Contributions and grants received

$10,426,406

Grants paid

$21,000

Program service revenue

$158,446

Investment income

$389,622

Other revenue

$0

Total assets, end of year

$10,152,011

Total liabilities, end of year

$4,715,573

Net assets or fund balances, end of year

$5,436,438

Program services expenses (Part IX)

$7,919,258

Management and general expenses

$2,183,456

Fundraising expenses

$752,674

Program service expenses (Part III)

$7,919,258

Program services were 73.0% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2023

• RESEARCH & MEDICALTHE 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 A GOVERNING BOARD COMPRISED OF PATIENTS, COPD FOUNDATION STAFF, AND OUTSIDE MEDICAL EXPERTS, THE INFORMATION WILL BE LOCATED IN A SECURE DATABASE THAT CAN BE USED FOR RESEARCH AND OTHER PURPOSES - ULTIMATELY SUPPORTING WORK TO LEAD TO A DEEPER UNDERSTANDING OF THE DISEASE. THE COPD FOUNDATION HAS EMBARKED ON A NEW RECRUITMENT EFFORT TO ENROLL NEW PARTICIPANTS INTO THE PPRN.THE COPD FOUNDATION IS CONTINUING THE ACTIVITIES OF THE PATIENT INSPIRED VALIDATION OF OUTCOME TOOLS (PIVOT) INITIATIVE. PIVOT WAS ESTABLISHED TO BE A DRIVING FORCE FOR INTEGRATING THE PATIENT AND THE PATIENT VOICE INTO OUTCOME MEASUREMENT IDENTIFICATION, VALIDATION, AND USE IN CHRONIC LUNG DISEASE RESEARCH AND CLINICAL TRIALS. THE PIVOT TEAM HAS PUBLISHED ITS FIRST MANUSCRIPT "A UNIFIED SET OF PATIENT-INSPIRED HEALTH CONCEPTS FOR COPD: A NORTH STAR FOR UNDERSTANDING TREATMENT BENEFIT" WHICH REPORTS ON THE APPROACH THE PIVOT TEAM WILL BE TAKING TO DELIVER ITS OBJECTIVES OF FOSTERING PATIENT FOCUSED RESEARCH AND THERAPEUTICS DEVELOPMENT.THE COPD FOUNDATION EXECUTED, PARTICIPATED IN, AND SUPPORTED THE PROGRESS OF MULTIPLE RESEARCH AND CLINICAL 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 DEVELOPMENT OF NEW THERAPIES AND MEDICAL DEVICES TO ADDRESS UNMET NEEDS. THE COPD FOUNDATION ALSO PARTICIPATED IN SEVERAL ACTIVITIES THAT ARE TARGETING PEOPLE WITH EARLY COPD WITH THE AIM TO DEVELOP APPROACHES THAT CAN BE USED TO SLOW DISEASE PROGRESSION.

  Expenses $4,026,879 · Revenue $1,299,860

• BRONCHIECTASIS & NTM LUNG DISEASETHE COPD FOUNDATION PARTNERED WITH SEVERAL GLOBAL ORGANIZATIONS TO CONTINUE THE ANNUAL WORLD BRONCHIECTASIS DAY AWARENESS CAMPAIGN. THE CAMPAIGN REACHED MILLIONS OF PEOPLE AND PRODUCED SEVERAL PIECES OF DIGITAL CONTENT FOR INTERNATIONAL DISTRIBUTION SUCH AS EDUCATIONAL EVENTS, ENGAGEMENT CAMPAIGNS, AND INTERACTIVE WEB PAGES. 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. THE REGISTRY REACHED NEARLY 7,000 ENROLLEES AND 24 SITES CONTRIBUTING TO ENROLLMENT AND LONG-TERM DATA COLLECTION. SEVERAL BRR ABSTRACTS WERE PRESENTED AT INTERNATIONAL CONFERENCES, AND MULTIPLE BRR MANUSCRIPTS WERE PUBLISHED AS A RESULT OF THE REGISTRY DATA COLLECTION.THE BRONCHIECTASIS AND NTM CARE CENTER NETWORK LAUNCHED IN THE SPRING AND RECEIVED NUMEROUS APPLICATIONS FROM INSTITUTIONS ACROSS THE COUNTRY. THE CCN IS BEING ESTABLISHED TO HELP FACILITATE ACCESS TO SPECIALIZED CARE. THIS NATION-WIDE NETWORK OF CENTERS WILL STRIVE TO PROVIDE PROMPT AND ACCURATE DIAGNOSIS AND OUTSTANDING MEDICAL CARE, RESOURCES, AND EDUCATION TO THOSE IMPACTED BY THESE CHRONIC LUNG DISEASES.

  Expenses $1,806,539 · Grants $20,000

• 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 FOUNDATION ADDED THREE PRESENTATION DECKS TO OUR HEALTH CARE PROVIDER 101 LIBRARY COVERING A VARIETY OF TOPICS SUCH AS, NTM LUNG DISEASE, NEW PARADIGMS IN COPD CARE, AND CULTURAL HUMILITY IN CARE DELIVERY. THE FOUNDATION ALSO RELEASED TWO NEW E-COURSES, A SPANISH VERSION OF THE GENETIC COPD 101 E-COURSE AND AN E-COURSE ABOUT SHINGLES.THE COPD FOUNDATION ENSURED THAT PATIENTS STAY UP TO DATE ON BEST PRACTICES FOR MANAGING COPD BY RELEASING A COMBINATION COPD 101 AND 201 BOOKLETS, DELVING DEEPER INTO TOPICS SUCH AS COMORBIDITIES, NUTRITION, AND MEDICATIONS. THESE BOOKLETS WERE MADE AVAILABLE IN ENGLISH, SPANISH, AND FRENCH, BOTH IN PRINT AND ONLINE. THE 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. COPD FOUNDATION CONTINUED TO EXPAND 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, AS WELL AS INSTITUTING MONTHLY VIRTUAL HARMONICA PLAY-ALONGS.

  Expenses $961,771 · Grants $1,000

• 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.MEMBERSHIP IN THE COPD FOUNDATION CAPTAINS PROGRAM GREW BY 47%. 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. HUNDREDS 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.

  Expenses $653,357

• 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 FY24 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 AND SUPPLEMENTAL OXYGEN LEGISLATION THROUGH CONGRESS AND THE SUBMISSION OF OVER 70 BUDGET REQUESTS TO LEGISLATIVE OFFICES FOR THE FY25 APPROPRIATIONS CYCLE. OVER 50 ADVOCATES JOINED THE COPD FOUNDATION IN WASHINGTON, D.C. TO ADVOCATE FOR CRITICAL LUNG HEALTH POLICIES DURING THE IMPACT LUNG HEALTH 2024 LEGISLATIVE ADVOCACY CAMPAIGN, REPRESENTING 54 SENATE DISTRICTS, 38 HOUSE DISTRICTS, AND 26 STATES.

  Expenses $443,498

• 360NET OPERATIONS

  Expenses $27,214

As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

• AMERICAN THORACIC SOCIETY INC

  $21,000

  RESEARCH

Provenance

Return type

form_990

Tax year

2023

Filed

5 May 2025

IRS schema version

2023v6.0

Source object

202531269349302653

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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