Disease, Disorders, Medical Disciplines

COPD FOUNDATION INC

  • Coral Gables, FL
  • www.copdfoundation.org

Mission Statement

The COPD Foundation's mission is to prevent and cure Chronic Obstructive Pulmonary Disease and to improve the lives of all people affected by COPD.

Main Programs

  1. Mobile Spirometry Unit
  2. COPD Information Line
  3. COPD Digest
  4. Lung Health Professional Magazine
  5. Bronchiectasis Research Registry
  6. Pulmonary Education Program
  7. Operation 435
  8. COPD Patient-Powered Research Network

service areas

International

Self-reported by organization

ruling year

2005

chief executive

Mr. John W. Walsh

Self-reported by organization

co-chief executive

Mr. Craig Kephart

Self-reported by organization

Keywords

COPD, research, education, early diagonsis, mobile spirometry, national

Self-reported by organization

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EIN

20-1048322

Physical Address

50 F St NW Suite 950

Washington, DC 20001

Also Known As

COPD FOUNDATION

Contact

Cause Area (NTEE Code)

Lung (G45)

Lung (H45)

Alliance/Advocacy Organizations (E01)

IRS Filing Requirement

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

Programs + Results

How does this organization make a difference?

Impact statement

Support from donors has enabled the COPD Foundation to make significant progress in the past year. Here are some highlights:

• The COPD Foundation’s Pulmonary Education Program (PEP) continues to expand, and now has over 230 participating pulmonary rehabilitation facilities. Through PEP, the COPD Foundation provides free educational materials to patients with COPD. After graduating from pulmonary rehabilitation, patients can enroll in the On Track with COPD program, which follows up with patients over a 24 month period to track their progress managing their COPD.

• The COPD Information Line offers support, advice, and general information to COPD patients. The Information Line allows patients, caregivers, and medical professionals to connect with support groups, clinical trials, rehabilitation facilities, and the COPD Foundation’s free, high quality educational materials and serial publications, COPD Digest and Lung Health Professional. Our Associates can speak to callers in four languages and offer translation into over 175.

• The COPD Foundation has launched or expanded a number of ways for COPD patients and their caregivers to get involved in research, advocacy, and community building. Our growing online community, COPD360social, allows COPD patients, caregivers, medical professionals, and friends to connect with each other, share stories and advice, and stay informed of new developments in research, advocacy, and community events.

Programs

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

Self-reported by organization

Program 1

Mobile Spirometry Unit

The MSU is a mobile testing program that provides essential screenings and tests for lung health. The MSU provides lung function testing equipment, Respiratory therapist coordination, and educational materials. The goal of the MSU program is to make lung health screening and education as prevalent as blood pressure or cholesterol testing.

Category

Diseases & Disorders

Budget

Population Served

Adults

None

None

Program 2

COPD Information Line

The C.O.P.D. Information Line, 866-316-COPD (2673), is a toll-free number for peer-to-peer information and referrals on COPD by patients and caregivers impacted by COPD. Callers receive one-on-one support from an Associate.

Since inception, we’ve helped thousands of callers with resources and support. This is your one-stop shop for everything COPD.

Category

Diseases & Disorders

Budget

Population Served

Adults

None

None

Program 3

COPD Digest

The COPD Digest is the first free internationally distributed magazine on COPD. Published quarterly, the COPD Digest offers practical advice, news and information on treatment and resources to COPD patients, healthcare providers, families, and caregivers.

Category

Patient Education

Budget

Population Served

None

None

None

Program 4

Lung Health Professional Magazine

In March 2010, the COPD Foundation launched Lung Health Professional Magazine (LHP). It is a quarterly magazine is written for primary care physicians, physician assistants, nurse practitioners, respiratory therapists, and other allied healthcare professionals. Its circulation reaches over 26,000 subscribers, and it’s available—to you—free of charge!

Category

Communications & Public Education

Budget

Population Served

None

None

None

Program 5

Bronchiectasis Research Registry

The Bronchiectasis Research Registry 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 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.

Category

Lung Diseases Research

Budget

Population Served

None

None

None

Program 6

Pulmonary Education Program

Individuals with COPD who participate in pulmonary rehabilitation are actively working to improve their lives through exercise and education in order to achieve effective health management. The COPD Foundation supports these efforts by providing educational materials, resources and support to pulmonary rehabilitation facilities, free of charge.

In addition to resources used in the course of Phase II Pulmonary Rehab, PEP offers the On Track health management program to pulmonary rehab graduates. On Track helps individuals with COPD maintain the gains they made in rehab so they may stay as healthy, active and independent as possible over the long term.

Category

Rehabilitation Services

Budget

Population Served

None

None

None

Program 7

Operation 435

Looking for a way to make a difference in your community? Be part of the movement by signing up for Operation 435--the COPD community's leading grassroots advocacy group.

A COPD advocate is someone who stands up for the COPD community by making his or her voice heard in our representative democracy. Only by making ourselves heard can we help raise awareness, increase education, improve diagnosis, and fund research in order to improve the lives of everyone affected by COPD.

Category

Advocacy

Budget

Population Served

None

None

None

Program 8

COPD Patient-Powered Research Network

The COPD Patient-Powered Research Network will be a research registry of over 75,000 individuals 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 is kept in a secure database to be used for research – ultimately leading to a deeper understanding of the disease.

Category

Lung Diseases Research

Budget

Population Served

None

None

None

Charting Impact

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

Self-reported by organization

  1. What is the organization aiming to accomplish?
    The COPD Foundation's mission is to prevent and cure COPD and improve the lives of people affected by the disease. The organization seeks to speed innovations that will make treatments more effective and affordable, undertake initiatives that result in expanded services for COPD patients, and improve the lives of patients with COPD and related disorders through research, education, prevention and, ultimately, a cure.
  2. What are the organization's key strategies for making this happen?
    The Foundation executes numerous education, advocacy, and research programs that serve patient, caregiver, and health care provider populations. Such programs include:

    - COPD Patient-Powered Research: will be a research registry of over 75,000 individuals 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 is kept in a secure database to be used for research – ultimately leading to a deeper understanding of the disease.
    - COPD360social: COPD360social is an online community for individuals affected by COPD, including patients, family members, caregivers, physicians and other healthcare providers. It provides a single online home for these millions of individuals. COPD360social provides our target audience with an engaging and interactive social collaboration environment through which they can have more direct interaction with each other and with the Foundation.
    - The COPD Action Center: serves as a platform to mobilize, allowing the COPD Foundation to quickly alert advocates when they are needed to reach out to Congress.
    - COPD Biomarker Qualification Consortium: the Biomarkers Consortium was created to help fast track research for better treatment and medicines that’ll help improve the lives of those with COPD.
    - And much more can be found at www.copdfoundation.org
  3. What are the organization's capabilities for doing this?
    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.
  4. How will they know if they are making progress?
    Each COPDF program has unique metrics that indicate individual successes. Our overarching objectives are:

    - 15 million undiagnosed individuals living with COPD receive spirometry testing and a diagnosis
    - A cure is developed for COPD
    - We create the largest research registry of COPD patients
    - Employer and government cost burden of COPD decreases from $42 billion annually due to increased diagnosis and treatment, lower hospital readmission rates.
  5. What have and haven't they accomplished so far?
    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.

service areas

International

Self-reported by organization

Blog

The organization's Blog

Social Media

@COPDFoundation

@COPDFoundation

External Reviews

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

COPD Foundation, Inc
Fiscal year: Jul 01-Jun 30
Yes, financials were audited by an independent accountant.

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Operations

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

COPD FOUNDATION INC

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2014, 2013 and 2012
  • Board Chair and Board Members
  • Access to the GuideStar Knowledge Base Search
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CHIEF EXECUTIVE FOR FISCAL YEAR

Mr. John W. Walsh

co-chief executive

Mr. Craig Kephart

BIO

John Walsh is the Co-founder and President of the COPD Foundation and Co-founder, President and CEO of the Alpha-1 Foundation, a research organization which has invested more than $46 million to support Alpha-1 Antitrypsin Deficiency research and research-related projects, and AlphaNet, Inc. (a unique not-for-profit health disease management services company run by and for patients). He is a former member of the NIH Director’s Council of Public Representatives, is on the NIH’s Council of Councils and a member of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Advisory Council. He is also a member of the US COPD Coalition Executive Committee, Past-Chair of the International COPD Coalition (2006-2008), Past Chair (2005-2006) of the National Health Council’s Board of Directors and is currently a board member, Past Chair and former member of the American Thoracic Society Public Advisory Roundtable (PAR), was the Presidential Appointee (2004-2005) of the American Thoracic Society’s Board of Directors and a Trustee of the Foundation of the American Thoracic Society (2006-2008). In 2002, Mr. Walsh’s contribution to pioneering collaboration in orphan drug development was recognized by the FDA with the Commissioner’s special citation. Mr. Walsh regularly testifies before Congress and advisory groups as a patient advocate. Mr. Walsh was diagnosed with Alpha-1-related COPD in 1989.

Governance

BOARD CHAIR

Dr Byron Thomashow

Columbia Presbyterian Medical Hospital

BOARD LEADERSHIP PRACTICES

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BOARD ORIENTATION & 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?


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CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


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ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


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BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


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BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?