Pulmonary Fibrosis Foundation

Imagine a world without pulmonary fibrosis

Chicago, IL   |  www.pulmonaryfibrosis.org

Mission

The Pulmonary Fibrosis Foundation mobilizes people and resources
to provide access to high quality care and leads research for a cure so
people with pulmonary fibrosis will live longer, healthier lives.

Ruling year info

2000

President, Chief Executive Officer

Mr. William Schmidt

Main address

230 East Ohio Street Suite 500

Chicago, IL 60611 USA

Show more contact info

EIN

84-1558631

NTEE code info

Lung (H45)

Fund Raising and/or Fund Distribution (G12)

Human Service Organizations (P20)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Pulmonary fibrosis is a family of more than 200 different lung diseases. Doctors find it difficult to diagnose, and many times patients are misdiagnosed. Adding to this, there is limited awareness of the disease which not only affects the time to diagnose but also affects the amount of funding that is directed towards the disease. The Pulmonary Fibrosis Foundation aims to lead the charge in raising awareness, providing disease education and funding research so that patients that have the disease will live longer, healthier lives.

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?

PFF Summit

Features an innovative three-day continuing medical education (CME) program for physicians, researchers, registered nurses, and allied health professionals. Additionally, it includes a separate patient, family member, and caregiver program to address the growing educational needs of the pulmonary fibrosis community.

Population(s) Served
Caregivers
Families

A research-focused initiative consisting of de-identified patient information and biological samples, all of which will be used to facilitate the development of effective therapies and provide researchers with data in order to address specific research questions and facilitate recruitment for clinical trials.

Population(s) Served
Adults

The Educational Program provides patients, caregivers, family members, and medical providers access to materials covering a range of topics, including a Patient Information Guide, Disease Awareness Guide, Oxygen Guide, A Disease Webinar Series, and various other resources.

Population(s) Served
Adults

This program empowers patients, caregivers and health care professionals as spokespersons for the PF community on behalf of the PFF.

Population(s) Served
Adults

The CCN connects leading medical centers throughout the United States that have expertise in treating fibrotic lung diseases. These institutions are comprised of multi-disciplinary teams that deliver comprehensive patient care. The goal of the CCN program is to elevate the standard of care for patients living with pulmonary fibrosis.

Population(s) Served
Adults

Where we work

Accreditations

Better Business Bureau Wise Giving Alliance 2014

Charity Navigator 2018

National Health Council 2018

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of support groups offered

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people, Caregivers, Families, Parents, Widows and widowers

Related Program

PFF Care Center Network

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

We support 150 Pulmonary Fibrosis support groups around the country as well as monthly video support groups.

Number of patient consultations

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, Families, Parents, Non-adult children, Widows and widowers

Related Program

Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The PFF Help Center offers everyone the most up-to-date medical information, support services, and other essential resources.

Number of meetings or briefings held with policymakers or candidates

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people

Related Program

Education

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

The PFF advocates for our community on issues such as access to supplemental oxygen, the need for federally funded PF research. Each year, the Foundation organizes PFF Hill Day.

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people

Related Program

Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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.

1. Accelerate new and improved treatments and, ultimately, a cure.
Currently, two FDA-approved therapies have been shown to slow the progression of pulmonary fibrosis, but there remains no cure for this deadly disease. Rapid development of more effective treatments to prevent, halt, or reverse lung fibrosis and inflammation is imperative.

2. Improve the care of all patients with PF.
The care received by PF patients may vary by medical center, provider, and region due to the inherent complexity of making a diagnosis and the limited access to care. People living in underserved and rural communities may be
especially vulnerable to disparities in care. The PFF will expand its efforts to ensure more consistent care across the U.S.

3. Provide reliable, high-quality patient support and education.
The PFF hosts a suite of programs that provide support and education to patients, their caregivers and families, and healthcare professionals. The PFF Help Center offers up-to-date medical information, including the availability of support services. The PFF’s Disease Education Webinar Series and written education materials
cover vital medical topics. PFF-sponsored support groups let participants share experiences, practical information, and resources. The PFF Ambassador program empowers patients, caregivers, and healthcare professionals to become spokespeople for the PF community. These programs are all available to the community
free of charge.

Partner with researchers and industry to leverage and enhance the use of the PFF Registry and PFF Care Center Network (CCN) to study key PF research questions.

Lead an effort to work with the FDA to improve and speed up the process for approving new PF treatments.

Increase participation of patients with PF in clinical trials.

Enhance public policy advocacy efforts to increase funding of PF-related research at the National Institutes of Health and U.S. Department of Defense.

Support the next generation of PF researchers by expanding the PFF Scholars program.

Facilitate greater research collaboration among the CCN centers.

Establish best practices across the CCN to identify PF standards of care.

Improve access to supplemental oxygen and pulmonary rehabilitation.

Redirect general awareness efforts to create greater awareness of the PFF and its resources.

Create a more focused, tailored support and education path for newly diagnosed patients.

The Pulmonary Fibrosis Foundation is focused on our mission to act as the trusted resource for all who are affected by this disease. Our community programs include:

PFF Care Center Network
PFF Registry
PFF Patient Communication Center
PFF Ambassador Program
An international network of support groups
The PFF Summit
Comprehensive disease education materials

We hosted our 6th PFF Summit in 2021. More than 1,000 patients, caretakers, physicians, researchers, and industry partners gathered virtually for our largest Summit to date.

Our Care Center Network has grown to 68 sites nationwide, and we will continue to expand.

Our Support Group Network now numbers over 150 across the globe and continues to grow.

We plan to introduce the next phase of the Registry in 2022, the PFF Community Registry. The Community Registry will greatly increase the number of subjects in the study, will be more efficient in data collection, and will increase utilization from researchers. The Community Registry will be an unmatched resource for future research that will help lead us down a path for a cure.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Patients, Caregivers, physicians, researchers, sponsors, industry partners.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person),

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    In developing the new strategic plan, we invited patients, doctors, researchers, and industry partners to participate in focus groups to help guide and decide the areas of focus over the next three years.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • Which of the following feedback practices does your organization routinely carry out?

    We aim to collect feedback from as many people we serve as possible, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

Pulmonary Fibrosis Foundation
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Operations

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

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Connect with nonprofit leaders

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

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Pulmonary Fibrosis Foundation

Board of directors
as of 1/18/2022
SOURCE: Self-reported by organization
Board chair

David McNinch

William Schmidt

Pulmonary Fibrosis Foundation

George Eliades

Martin Attwell

David McNinch

Laurie Chandler

Terence Hales

Jeff Harris

Julie Halston

Andrew Limper

Dana Ball

Barbara Murphy

Susan Jacobs

Pat Rosa

Pankaj Kamani

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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • 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? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 1/18/2022,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 01/18/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.