Copd Foundation Inc is located in Miami, FL. The organization was established in 2005. According to its NTEE Classification (G43) the organization is classified as: Heart & Circulatory System Diseases & Disorders, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 06/2023, Copd Foundation Inc employed 40 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Copd Foundation Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 06/2023, Copd Foundation Inc generated $8.0m in total revenue. This represents a relatively dramatic decline in revenue. Over the past 6 years, the organization has seen revenues fall by an average of (4.8%) each year. All expenses for the organization totaled $9.6m during the year ending 06/2023. You can explore the organizations financials more deeply in the financial statements section below.
Since 2017, Copd Foundation Inc has awarded 18 individual grants totaling $1,103,299. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
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.
Describe the Organization's Program Activity:
Part 3 - Line 4a
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.
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.
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.
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.
Name (title) | Role | Hours | Compensation |
---|---|---|---|
James D Crapo MD Board Chair | OfficerTrustee | 10 | $0 |
Wayne E Withers Jr Vice-Chair, Treasurer | OfficerTrustee | 2 | $0 |
Byron M Thomashow MD Chief Medical Officer | OfficerTrustee | 2 | $0 |
Richard Casaburi PHD MD Director | Trustee | 2 | $0 |
Stew Cogan ESQ Director | Trustee | 2 | $0 |
Leonard Fromer MD Director | Trustee | 2 | $0 |
Vendor Name (Service) | Service Year | Compensation |
---|---|---|
Bem Consulting Llc Contractor | 6/29/23 | $188,333 |
Jcyates Consulting Llc Contractor | 6/29/23 | $182,081 |
Perl Pllc Contractor | 6/29/23 | $141,500 |
Alan L Hamilton Consulting Inc Contractor | 6/29/23 | $116,250 |
Lynn Sobel & Associates Contractor | 6/29/23 | $110,000 |
Statement of Revenue | |
---|---|
Federated campaigns | $0 |
Membership dues | $0 |
Fundraising events | $0 |
Related organizations | $0 |
Government grants | $29,337 |
All other contributions, gifts, grants, and similar amounts not included above | $7,465,783 |
Noncash contributions included in lines 1a–1f | $0 |
Total Revenue from Contributions, Gifts, Grants & Similar | $7,495,120 |
Total Program Service Revenue | $160,312 |
Investment income | $193,658 |
Tax Exempt Bond Proceeds | $0 |
Royalties | $0 |
Net Rental Income | $0 |
Net Gain/Loss on Asset Sales | $117,633 |
Net Income from Fundraising Events | $0 |
Net Income from Gaming Activities | $0 |
Net Income from Sales of Inventory | $0 |
Miscellaneous Revenue | $0 |
Total Revenue | $7,966,723 |
Statement of Expenses | |
---|---|
Grants and other assistance to domestic organizations and domestic governments. | $0 |
Grants and other assistance to domestic individuals. | $2,500 |
Grants and other assistance to Foreign Orgs/Individuals | $0 |
Benefits paid to or for members | $0 |
Compensation of current officers, directors, key employees. | $0 |
Compensation of current officers, directors, key employees. | $0 |
Compensation to disqualified persons | $0 |
Other salaries and wages | $2,962,995 |
Pension plan accruals and contributions | $0 |
Other employee benefits | $552,152 |
Payroll taxes | $234,615 |
Fees for services: Management | $0 |
Fees for services: Legal | $0 |
Fees for services: Accounting | $106,014 |
Fees for services: Lobbying | $0 |
Fees for services: Fundraising | $0 |
Fees for services: Investment Management | $0 |
Fees for services: Other | $4,717,924 |
Advertising and promotion | $0 |
Office expenses | $38,111 |
Information technology | $89,288 |
Royalties | $0 |
Occupancy | $25,402 |
Travel | $96,949 |
Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
Conferences, conventions, and meetings | $112,256 |
Interest | $0 |
Payments to affiliates | $0 |
Depreciation, depletion, and amortization | $6,930 |
Insurance | $55,019 |
All other expenses | $14,786 |
Total functional expenses | $9,649,179 |
Balance Sheet | |
---|---|
Cash—non-interest-bearing | $1,793,636 |
Savings and temporary cash investments | $1,527,199 |
Pledges and grants receivable | $0 |
Accounts receivable, net | $735,281 |
Loans from Officers, Directors, or Controlling Persons | $0 |
Loans from Disqualified Persons | $0 |
Notes and loans receivable | $0 |
Inventories for sale or use | $0 |
Prepaid expenses and deferred charges | $409,885 |
Net Land, buildings, and equipment | $17,609 |
Investments—publicly traded securities | $4,042,892 |
Investments—other securities | $0 |
Investments—program-related | $385,208 |
Intangible assets | $0 |
Other assets | $0 |
Total assets | $8,911,710 |
Accounts payable and accrued expenses | $1,057,638 |
Grants payable | $0 |
Deferred revenue | $2,629,446 |
Tax-exempt bond liabilities | $0 |
Escrow or custodial account liability | $0 |
Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
Secured mortgages and notes payable | $0 |
Unsecured mortgages and notes payable | $0 |
Other liabilities | $0 |
Total liabilities | $3,687,084 |
Net assets without donor restrictions | $1,158,628 |
Net assets with donor restrictions | $4,065,998 |
Capital stock or trust principal, or current funds | $0 |
Paid-in or capital surplus, or land, building, or equipment fund | $0 |
Retained earnings, endowment, accumulated income, or other funds | $0 |
Total liabilities and net assets/fund balances | $8,911,710 |
Over the last fiscal year, Copd Foundation Inc has awarded $149,320 in support to 2 organizations.
Grant Recipient | Amount |
---|---|
UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL PURPOSE: RESEARCH | $123,302 |
JOHNS HOPKINS UNIVERSITY PURPOSE: RESEARCH | $26,018 |