PLATINUM2024

Cystic Fibrosis Foundation HQ

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

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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 in the U.S. is now 61 years old today.
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

Related Program

Cure

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The CFF funded $286M last year in the US across research, drug development, care, and training. Our research funding has increased significantly by 50% over the last five years.

Care for our community

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

Chronically ill people

Related Program

Care

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

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.

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

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals, To identify research and clinical care priorities

  • 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 take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to identify actionable feedback, It is difficult to reach people we seek to serve with whom we do not have a relationship

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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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.

Cystic Fibrosis Foundation

Board of directors
as of 08/27/2024
SOURCE: Self-reported by organization
Board chair

Ms. KC Bryan White

no affiliation

Michael L. Beatty, Esq.

Michael P. Boyle, M.D.

Dominic J. Caruso

Louis A. DeFalco

Teresa L. Elder

Carole B. Griego, M.D.

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

David A. Mount

Robert H. Niehaus

Eric R. Olson, Ph.D.

Steven Shak, M.D.

Eric J. Sorscher, M.D.

(nonvoting, Advisor)

Doris F. Tulcin

(nonvoting, Chair Emeritus)

John S. Weinberg

KC Bryan White

James R. Butler, II

(nonvoting, Advisor)

Eric C. Schneider, M.D.

(nonvoting, Advisor)

Elise Eberwein

(nonvoting, Advisor)

Kate O'Donnell

Dodzie Sogah, Ph.D.

Jessica H. Boyd, M.D.

Jennifer Taylor-Cousar, M.D.

(nonvoting, Advisor)

Paul A. Motenko

Catherine C. McLoud

(nonvoting, Chair Emeritus)

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