Cystic Fibrosis Foundation HQ

aka CF Foundation   |   Bethesda, MD   |  www.cff.org

Mission

The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.

Ruling year info

1957

President and Chief Executive Officer

Michael P. Boyle, M.D.

Main address

4550 Montgomery Avenue, Suite 1100N

Bethesda, MD 20814 USA

Show more contact info

EIN

13-1930701

NTEE code info

Lung (G45)

Specifically Named Diseases (G80)

Specifically Named Diseases Research (H80)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

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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?

Program

The CF Foundation's approach to curing cystic fibrosis and caring for those affected by the disease is three-fold.

Research
We fund more innovative, groundbreaking CF research than any other organization in the world.

We have invested hundreds of millions of dollars into CF research and drug development. The results of these bold investments have been astonishing. Because of our efforts, people with cystic fibrosis are living longer, healthier lives and pursuing dreams they never before thought possible.

Nearly every CF drug available today was made possible because of the Foundation’s support and our ongoing work with researchers to find new treatments and a cure.

Care
We provide expert care for people with CF through our nationwide network of accredited care centers.

Cystic fibrosis is a complex disease that affects every person differently. That's why we're dedicated to helping people with CF get individualized care that's tailored to their unique needs.

The Foundation supports and accredits a nationwide network of more than 130 CF care centers, which diagnose and treat nearly all CF patients. This care center network combines clinical research with medical care best practices, and has been cited by the National Institutes of Health as a model of effective and efficient health care delivery for a chronic disease.

Support
We help people with cystic fibrosis and their families get the tools and support they need to lead healthy, productive lives, today.

The incredible strides we're making in research and drug development mean nothing if people with CF don't have access to the care and therapies they need.

We're working diligently to ensure all people with CF have access to the best medical, educational, and financial resources available.

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

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

Medical awards program funding

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

Chronically ill people

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The CFF funded $248M last year in the US across research, drug development, care, and training. Our research funding has doubled over the last six years, and we will continue this momentum.

Care for our community

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

Chronically ill people

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This metric represents the number of patients receiving care annually at CFF-accredited care centers. We continue to evolve our proven care model to enable care for every person with CF.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Financials

Cystic 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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Cystic Fibrosis Foundation

Board of directors
as of 6/29/2021
SOURCE: Self-reported by organization
Board chair

Ms. Catherine C. McLoud

no affiliation

Michael Beatty, Esq.

Michael Boyle, M.D.

Dominic Caruso

Louis DeFalco

Teresa Elder

Richard Gray, Esq.

Carole Griego, M.D.

Susan Hook

Peter Mogayzel, Jr., M.D., Ph.D.

Chad Moore

David Mount

Robert Niehaus

Eric Olson, Ph.D.

Steven Shak, M.D.

Eric Sorscher, M.D.

Theodore Torphy, Ph.D.

Doris Tulcin

John Weinberg

Paul Whetsell

KC Bryan White

James Butler, II

(nonvoting, Advisor)

Eric Schneider, M.D.

(nonvoting, Advisor)

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 3/18/2021,

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

Leadership

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data