Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. 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.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
Foundation welcomes new members to advance its mission
Published on July 8, 2021
Today, the Cystic Fibrosis Foundation announced changes on its Board of Trustees, including the election of Jessica Boyd, MD; Dominic J. Caruso; and Paul Motenko as Trustees. James R. Butler, II; Eric Schneider, MD; and Jennifer L. Taylor-Cousar, MD,
have been elected to serve as non-voting advisors. Additionally, two long-serving members, Sue L. Hook and Ted J. Torphy, PhD, have retired from the Board.
“The CF Foundation Board of Trustees has a long history of bold vision in the fight against cystic fibrosis -- from daring to dream of a better life for people with CF, to supporting the Foundation’s pioneering efforts in venture philanthropy and expanding
our mission to reflect the needs of the first generation of adults with the disease,” said Catherine C. (Cam) McLoud, chair of the Board of Trustees. “We are grateful for the enduring contributions of long-serving members who have stepped down from
the Board and are pleased to welcome new leaders whose expertise reflects our most urgent priorities as we enter a new era in CF.”
A complete list of the CF Foundation’s Board of Trustees is available on cff.org.
(Top row, from left to right) Newly elected CF Foundation Board trustees Jessica Boyd, MD, MPH; Dominic Caruso; and Paul Motenko. (Bottom row, from left to right) Newly elected CF Foundation Board advisors James R. Butler, II; Eric Schneider, MD; and Jennifer Taylor-Cousar, MD, MSCS
Jessica Boyd, MD, MPH, Chief Medical Officer at Unity Health Care. Dr. Boyd has devoted her career to advancing health and promoting whole-person care in underserved communities. Dr. Boyd trained as a pediatric pulmonologist, which included experience
in public health and CF care. At Unity Health Care -- the largest network of community health centers in Washington, D.C.-- Dr. Boyd leads the organization in its mission to provide comprehensive primary and specialty care to patients, regardless
of ability to pay. Dr. Boyd previously was a medical strategist at the CF Foundation.
Dominic J. Caruso, retired Executive Vice President and Chief Financial Officer of Johnson & Johnson and CF grandfather. Mr. Caruso is the former chief financial officer of Johnson & Johnson and brings significant expertise in therapeutics development
to the Board as the Foundation continues to expand its program-related investments. He has been involved with the Foundation since 2005 and served as a member of the Foundation’s Delaware Valley Chapter Board from 2007 to 2018. Mr. Caruso joined the
Foundation’s Board of Trustees as an Advisor in August 2018 following his retirement from Johnson & Johnson, becoming a full voting member in May 2021.
Paul Motenko, former Co-Chief Executive Officer of BJ’s Restaurants, Inc. and CF father. Mr. Motenko joins the Board after 34 years of tireless advocacy and leadership in the CF community. His daughter, Stacy Carmona, has two nonsense CF mutations,
which places her among the 7% of people with CF who cannot benefit from currently available modulator therapies. Mr. Motenko is the chair of the Foundation’s Leadership Council Individual Giving Committee and chair of the Foundation’s Orange County
Chapter Board. He has helped raise millions of dollars to support groundbreaking CF research and advance the search for a cure. He is a co-founder and former co-CEO of BJ’s Restaurants Inc. and worked in the restaurant industry for 30 years.
James R. Butler, II, Tech Lead and Distinguished Engineer at Elastic. Mr. Butler has more than 20 years’ experience in operating system security and cybersecurity and is currently a tech lead and distinguished engineer at the search company Elastic
Security, built on Elastic Stack. He was previously chief technology officer at Endgame, a leading provider of cybersecurity software solutions, and has directed research teams at some of the most successful security companies, including FireEye and
Mandiant. Earlier in his career, he was a computer scientist at the National Security Agency and co-authored the best-selling book Rootkits: Subverting the Windows Kernel, on Windows operating system security. In addition to his significant
cybersecurity expertise, Mr. Butler brings his experience of living with cystic fibrosis and supporting the CF community to his role on the Board.
Eric Schneider, MD, Senior Vice President for Policy and Research at The Commonwealth Fund. Dr. Schneider is a leading health services researcher with a focus on policy in health care delivery reform. A former practicing primary care internal medicine
physician, he has also served on the faculty of Harvard Medical School, where he taught health care policy and quality improvement. At The Commonwealth Fund, a national health care policy and reform think tank, Dr. Schneider provides strategic guidance
to the organization’s public health and policy research initiatives. Dr. Schneider brings a lifelong commitment to health equity to his role on the Foundation’s Board.
Jennifer L. Taylor-Cousar, MD, MSCS,Pediatric and Adult Pulmonologist at National Jewish Health. Dr. Taylor-Cousar is an adult and pediatric pulmonologist, and medical director of clinical research services at National Jewish Health in Denver,
where she is the co-director of the adult CF clinic and Therapeutics Development Network site director. She is a tenured professor in the departments of internal medicine and pediatrics at National Jewish Health and the University of Colorado. Dr.
Taylor-Cousar has been the site primary investigator on more than 45 clinical research studies, including the Phase 3 trials of elexacaftor/tezacaftor/ivacaftor (Trikafta®). She is a member of the Foundation’s Rocky Mountain Chapter Board.
Dr. Taylor-Cousar serves on a number of Foundation committees and provides expertise across many facets of the disease, including women’s health and efforts to address health disparities among people of color with CF.
Sue L. Hook became involved in the Foundation’s mission more than 55 years ago, when, at age 15, she organized a fundraising event for a young neighbor who had cystic fibrosis. During her 36 years of service on the Board, Ms. Hook has been one
of the most determined and successful fundraisers for the Foundation’s mission, a stalwart CF advocate at the state and national levels, and an inspiring mentor to scores of Foundation volunteers. She remains actively involved in the CF community
and the search for a cure.
Ted J. Torphy, PhD, served on the Board for a total of 15 years (non-consecutive). Dr. Torphy served as a founding member and chair of the former CF Foundation Therapeutics Board of Directors and later as chair of the CF Therapeutics Development
Committee. His deep experience in biotechnology start-ups lent critical insights during the formation of the Foundation’s venture philanthropy model. Dr. Torphy’s contributions helped spur the development of transformative medicines for CF, including
the first medicines approved to address the underlying cause of CF.
The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The Foundation funds more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support.
Based in Bethesda, Md., the Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. To advance its mission in finding a cure for
all people living with cystic fibrosis, the CF Foundation launched its $500 million Path to a Cure initiative. This
ambitious research agenda aims to accelerate the next generation of transformative CF therapies and deliver a treatment for every person with CF. The CF Foundation is a donor-supported nonprofit organization. For more information, visit cff.org.
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