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    ABOUT CYSTIC FIBROSIS

    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.

    Role of Genetics in CF

    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.

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    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.

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    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.

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    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.

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    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.

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    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.

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    People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.

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    Care Centers

    Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.

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    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.

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    The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.

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    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.

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    For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.

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    About Our Research

    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.

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    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.

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    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.

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    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.

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The Warren Alpert Foundation and Harvard Medical School Recognize CF Research Pioneers

On Oct. 4, the Warren Alpert Foundation honored five CF scientists, including Dr. Francis Collins, for their trailblazing work in CF research. The Foundation received special acknowledgement for our role in driving this progress, marking the first time that an organization has been recognized by the Alpert Foundation.

Published on October 4, 2018

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Five of the world's leading cystic fibrosis researchers were honored by the Warren Alpert Foundation for pioneering discoveries that led to the development of the first disease-modifying treatments for CF. The Cystic Fibrosis Foundation also received special acknowledgement for its role in driving scientific progress in CF -- marking the first time the Alpert Foundation has recognized an organization.

The honorees' respective contributions were the focus of a scientific symposium on Oct. 4 at Harvard Medical School. Preston W. Campbell, III, M.D., president and CEO of the CF Foundation, delivered the keynote address at an award ceremony, describing the fundamental impact these discoveries continue to have on people with CF and highlighting the critical role the CF community played in supporting those advances.

“This year's Alpert Prize awardees have transformed the day-to-day lives of many individuals with CF and laid a foundation for exciting therapeutic developments that are still to come,” said Dr. Campbell. “We are forever grateful for their groundbreaking work and their inspiring commitment to collaboration. CF first emerged as a promising area of study because of the foresight and fierce determination of a small group of parents who were resolved to create a better future for their children. This remarkable group of scientists embodies the spirit that drove those early parents, and it is my great privilege to thank each of them today on behalf of all people with CF.” 

The CF Foundation is committed to building on these achievements through our ongoing research to identify treatments for all people with CF, including individuals with advanced disease.

The 2018 Warren Alpert Foundation Prize recipients are:

  • Francis Collins, Director, National Institutes of Health; and Lap-Chee Tsui, Founding President, The Academy of Sciences of Hong Kong and University Professor Emeritus, University of Toronto; who together led the international team of scientists that discovered the CFTR gene in 1989.
  • Michael Welsh, Professor of Internal Medicine - Pulmonary, Critical Care, and Occupational Medicine, University of Iowa, who discovered how mutations in the CFTR gene lead to CF and demonstrated that correcting the CFTR protein could restore defective chloride transport.
  • Paul Negulescu, Senior Vice President for Research, Vertex Pharmaceuticals, who, together with his team, was instrumental in developing the first precision medicines to treat the underlying cause of CF.
  • Bonnie Ramsey, Vice Chair and Endowed Professor of Pediatrics, University of Washington School of Medicine; Director, Center for Clinical and Translational Research, Seattle Children's Research Institute; who helped facilitate the clinical study of breakthrough CF treatments by establishing the Cystic Fibrosis Foundation Therapeutics Development Network and overseeing its rapid growth and success during her 16-year tenure as its executive director.

The CF Foundation provided financial support and scientific expertise across all these endeavors and facilitated collaboration among academic and industry researchers at pivotal moments.

“The successes we celebrate today are an instructive lesson in the power of collaboration among basic scientists, translational researchers, and front-line clinicians,” said George Q. Daley, dean of Harvard Medical School. “Just as importantly, these achievements remind us how much we can do when academicians, industry scientists, and nonprofit partners come together, sharing their acumen, talent, and passion on a common mission to alleviate human suffering caused by disease.”

Previous Alpert Award recipients include 2018 Nobel laureates James Allison and Tasuku Honjo for their discovery of cancer therapy by inhibition of negative immune regulation.

You can read more about the Alpert Prize and the specific achievements of each award recipient in the Alpert Foundation press release.

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