Cystic Fibrosis (CF) is an inherited and chronic disease related to mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, which results in the abnormal function of the secretory glands that are responsible for the production of mucus and sweat. The disease affects the lungs, pancreas, liver, intestines, sinuses, and reproductive organs, because of the high production of thick and sticky mucus around the organs.

Mucus is particularly problematic in the lungs. It blocks the airways, making it difficult for patients to properly breathe, and it facilitates the growth of bacteria that cause infections. Cystic fibrosis is a progressive disease for which there is currently no cure, but the CF community of patients, families, friends, physicians, researchers, advocates and organizations work to improve the lives of CF patients. The Cystic Fibrosis Foundation (CFF) is currently the largest organization in the U.S. focused on that goal.

Cystic Fibrosis Foundation’s History

In 1955, when the life expectancy of patients with cystic fibrosis was lower than 10 years, a group of concerned parents joined forces to fight the disease. The first years of the Cystic Fibrosis Foundation were filled with obstacles because little was known about the disease.  Still, families continued to work and six years after the CFF was established, the group had already created two centers for the treatment of CF and an accredited care centered network. Throughout the years, thousands of people have joined the cause and the CFF now has a volunteer base that spans nationwide. It is heralded as the world’s leader in the search to cure CF.

Some milestones of the foundation include the launching in 1966 of a patient data registry that collects health information of patients seen at foundation-accredited care centers; the landmark increase of CFF-accredited care centers to more than 100 in 1978; the approval of the first drug meant for CF patients in 1993; and the creation in 2000 of the Cystic Fibrosis Foundation Therapeutics (CFFT), a nonprofit research affiliate of the organization focused on governing drug discovery and development efforts.

In addition, the CFF has participated in the development of Kalydeco, the first drug approved to address the underlying cause of the disease. CFF also assisted in the development of Orkambi, the lumacaftor/ivacaftor combination drug for people ages 12 and older who have two copies of the most common CF mutation, F508del.

Currently, because of CFF support, patients can live into their 30s, 40s and older.

Mission of the Cystic Fibrosis Foundation

“The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care,” according to the CFF website. “We will not rest until we find a cure for all people with cystic fibrosis. The mission of the Cystic Fibrosis Foundation is fueled by a dedicated group of scientists, caregivers, donors, volunteers and people with CF and their families who are united by a common goal: to find a cure for this devastating disease and help those with CF live longer, healthier lives.”

The CFF is driven by a dream that one day, no person will lose their life or the the live of their child, sibling, parent or friend to CF. To support the mission started in 1955, the organization in November 2012 launched its most comprehensive strategic planning initiative: “2014-2018 Strategic Plan Report: Our Commitment to a Cure.” The document details CFF’s mission projects and presents six priorities: pipeline and promise, adherence, access to treatment and quality care, communications, fundraising and outreach, and CF adult engagement.

Cystic Fibrosis Foundation Resources

The Cystic Fibrosis Foundation offers a series of resources not only for CF patients, but also for loved ones and medical professionals working in the field. “We provide funding for and accredit more than 120 CF care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF. Located at teaching and community hospitals across the country, these care centers offer the best care, treatments, and support for those with CF,” according the foundation.

In addition to CF care centers and affiliate programs,  70 CFF chapters and branch offices across the U.S. offer the CF community information and support on topics that include diagnosis, treatment, research, legal rights, insurance, clinical care guidelines and emotional wellness. The CFF works under a venture philanthropy model that enables raising and investing limitless funds. Investments focus on funding biotechnology and pharmaceutical companies for breakthrough drugs and other projects that help discover and develop CF therapies.

Cystic Fibrosis Foundation’s Members

The Cystic Fibrosis Foundation functions under the leadership of a Board of Trustees with Catherine C. McLoud as Chair.

The President and CEO is Dr. Preston W. Campbell, III; Vera H. Twigg is the Executive Vice President and Chief Financial Officer. Leah Bloom, Ph.D., serves as Chief of Strategy; Dr. Michael Boyle as Senior Vice President of Therapeutics Development; Amy DeMaria as Senior Vice President of Communications; Mary B. Dwight as Senior Vice President for Policy and CF Community Affairs; Maureen Fraser as Vice President of Field Management; and Glen Goldmark as Senior Vice President of Human Resources.

Other senior staff members are: Dr. Bruce C. Marshall as Senior Vice President of Clinical Affairs; David McLoughlin as Senior Vice President of Operations; Marybeth McMahon, Ph.D. as Chief of Staff; Gina Schewe as Vice President of Major and Planned Giving; Dr. William Skach as Senior Vice President of Research Affairs; and Timothy A. Waire, Jr. as Chief Information Officer.

 

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.