GOLD2023

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?

Cure

The CF Foundation has made unparalleled progress in understanding and treating cystic fibrosis. Since the 1980s, the CF Foundation has continuously achieved tremendous progress in research, from supporting the scientists who discovered the defective gene that causes the disease in 1989, to focusing on translating advances in the lab into new treatments for people with CF today.

Today, we are harnessing the best scientific minds and technology to further our research efforts – advancing new therapies more quickly, while working to find a cure for all people with CF. Our “Path to a Cure” is an ambitious research initiative that builds on the CF Foundation’s highly successful venture philanthropy strategy to accelerate the pace of progress in CF drug discovery and development, identify ways to address the underlying cause of CF. and ultimately help end this disease.

Population(s) Served
Adults
Children and youth
Ethnic and racial groups
People with diseases and illnesses

Highly specialized care has increased the lifespan of those with CF and remains a mainstay of our efforts to ensure that every person with this disease can live a long and healthy life. The current median age of survival for a child born with CF today is now 53 years old, an increase of 15 years from just a decade prior.
The CF Foundation is a critical source of funding for a network of more than 130 accredited CF care centers across the US. These grants provide vital support for multidisciplinary care teams so that people with CF receive coordinated care from a range of specialists. As CF changes, we continue to evolve our proven care model to enable exceptional care for every person with CF based on their unique medical needs.
In addition to supporting personalized care, the CF Foundation is working to address the serious health conditions that can arise as a result of CF’s damaging effects to the body, including lung infections, gastrointestinal issues, and mental health.

Population(s) Served
Adults
Children and youth
Ethnic and racial groups
People with diseases and illnesses

As people with cystic fibrosis live longer, they are confronting new challenges. Working together with the CF community, the CF Foundation offers meaningful programs to encourage connection and support people with CF in living their best possible life no matter where they are on their unique journey. In addition, we advocate for people with CF through supporting and promoting programs, agencies, and policies that help advance research and drug development, improve access to care, and raise awareness of the disease. People with CF are at the heart of all we do.

Population(s) Served
Adults
Children and youth
People with diseases and illnesses
Adults
Children and youth
People with diseases and illnesses
Adults
Children and youth
People with diseases and illnesses

Where we work

Videos

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 $254M 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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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.

Cystic Fibrosis Foundation

Board of directors
as of 01/31/2023
SOURCE: Self-reported by organization
Board chair

Ms. KC White

no affiliation

Michael L. Beatty, Esq.

Michael P. Boyle, M.D.

Dominic J. Caruso

Louis A. DeFalco

Teresa L. Elder

Richard J. Gray, Esq.

Carole B. Griego, M.D.

Susan L. Hook

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

Chad T. Moore

David A. Mount

Robert H. Niehaus

Eric R. Olson, Ph.D.

Steven Shak, M.D.

Eric J. Sorscher, M.D.

Theodore J. Torphy, Ph.D.

Doris F. Tulcin

John S. Weinberg

Paul W. Whetsell

KC Bryan White

James R. Butler, II

(nonvoting, Advisor)

Eric C. 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 1/31/2023
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

No data

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 06/21/2022

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

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • 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.