GOLD2023

COPD Foundation

Take Action Today. Breathe Better Tomorrow.

Miami, FL   |  https://www.copdfoundation.org/

Mission

The COPD Foundation’s mission is to help millions of people live longer and healthier lives by advancing research, advocacy, and awareness to stop COPD, bronchiectasis, and NTM lung disease.

Ruling year info

2005

Chief Executive Officer

Dr. Jean Wright MD, MBA

Main address

3300 Ponce de Leon Blvd.

Miami, FL 33134 USA

Show more contact info

EIN

20-1048322

NTEE code info

Lung (G45)

Lung (H45)

Alliance/Advocacy Organizations (E01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2023, 2022 and 2021.
Register now

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

As many as 30 million people in the United States are living with COPD. However, it lags behind other conditions in government research funding, public awareness, and patient resources. The COPD Foundation works to bridge that gap through research, advocacy, education, and community programs.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

COPD Patient Powered Research Network

The COPD PPRN is a patient-reported registry that offers an opportunity to participate in survey-based research and provides a platform for patients to learn about additional research opportunities. COPD patients and those at risk for COPD may choose to enroll in the COPD PPRN and complete a baseline survey including measures such as demographics, vitals and disease specifics.

By enabling researchers, patients and clinicians to interact directly and to determine research priorities jointly, the clinical research becomes more patient centered and focuses on their needs. The COPD PPRN also includes an annual longitudinal follow up survey and additional survey opportunities on specific topics including pulmonary rehabilitation and medications.

Population(s) Served
People with diseases and illnesses

The BRIDGE project focuses on increasing the voice and inclusion of people with COPD and their caregivers in research. Its goals are:

1) Develop a patient/caregiver prioritized COPD related research agenda
2) Identify and enlarge the number of materials to support COPD patients/caregivers as investigators on research teams
3) Develop draft surveys to assess the impact and success of engaging COPD patients and caregivers as research team members

The BRIDGE project is funded by the Patient-Centered Outcomes Research Institute (PCORI) with the hope that the methods and tools developed by this project can be adapted in the future to also serve groups with other chronic conditions.

Population(s) Served
People with diseases and illnesses

The Bronchiectasis and NTM Research Registry (BRR) is a consolidated database of non-cystic fibrosis (non-CF) bronchiectasis and/or NTM patients from 15 clinical institutions across the United States.

The goal of the registry 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. As of September 2019, more than 3,300 people have enrolled in the registry.

Population(s) Served
People with diseases and illnesses

COPD360Social is an online social networking community dedicated solely to COPD and is seamlessly integrated with the COPD Foundation website. The platform allows the Foundation to more effectively engage our target audience and gain a deeper understanding of the ever-changing needs and interests of our community. Members include individuals affected by COPD including patients, family members, caregivers, friends, physicians, and other healthcare providers.

Population(s) Served
People with diseases and illnesses
Caregivers

BronchandNTM360social is an online community for individuals affected by Bronchiectasis and/or NTM, including patients, family members, caregivers, physicians and other healthcare providers. It serves as an online home for these communities and provides a comfortable venue to share thoughts and ideas, ask questions, start discussions, read and comment on blogs, and communicate with peers, thought leaders and community managers.

BronchandNTM360social has been used to collect patient feedback on research priorities and preferences for treatment, for patient recruitment, and for market research.

Population(s) Served
People with diseases and illnesses
Caregivers

Where we work

Awards

Standards of Excellence Certification 2013

National Health Council

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The COPD Foundation’s mission is to help millions of people live longer and healthier lives by advancing research, advocacy, and awareness to stop COPD, bronchiectasis, and NTM lung disease. Our priorities are to advance research towards a cure, improve quality of life, and build widespread awareness of chronic lung disease to educate and empower all who are impacted. Our vision is a world where everyone has the resources and opportunity to breathe well.

The Foundation executes numerous education, advocacy, and research programs that serve patient, caregiver, and health care provider populations. Such programs include the COPD Information Line, the COPD Patient-Powered Research Network (PPRN), the COPD Biomarker Qualification Consortium (CBQC), the COPDGene Study, and our free educational publications: COPD Digest, Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation, and our library booklets, flyers, and tools.

The COPD Foundation has cultivated partnerships across the U.S. and abroad to help support and implement its programs. Its online presence and development of COPD360social unifies these efforts and increases its scope. Its staff and board have possess various backgrounds with high levels in expertise including respiratory therapy, medicine, bio-tech, research, marketing, IT, advocacy, and education.

We established ourselves as the first public health Foundation solely dedicated to COPD. It is a 'one-stop-shop' for all issues related to COPD, from both patient and provider perspectives. We have successfully created a dynamic platform that connects patients with experts in the field, provides education and emotional support – essentially streamlining Foundation's work into a digital space. We have yet to diagnose the 15 million individuals living with COPD unknowingly, we are advocating for increased research dollars to find a cure for COPD.

Financials

COPD Foundation
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

The people, governance practices, and partners that make the organization tick.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

COPD Foundation

Board of directors
as of 11/13/2023
SOURCE: Self-reported by organization
Board chair

Dr. James Crapo

National Jewish Health Denver

Richard Casaburi

Harbor-UCLA Medical Center

Stew Cogan

Valerie Chang

Hawaii COPD Coalition

Leonard Fromer

Turner Impact Capital / The Kinetix Group

Donald Gray

MeiLan K. Han

University of Michigan Health System

Risa Stack

RA Capital

Byron M. Thomashow

Columbia University Medical Center / New York-Presbyterian Hospital

Wayne E. Withers

Withers Worldwide

Jean Wright

Atrium Health

Herbert Yardley

Yardley Car Company

Mark Dransfield

University of Alabama at Birmingham Lung Health Center / Birmingham VA Medical Center

Mike Rogers

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No