Cystic Fibrosis Foundation

Extracted Attributes

• Legal Status

  501(c)(3) non-profit organization

• Network Size

  Over 80 chapters and 115 accredited specialized treatment centers

• Founding Year

  1955

• Primary Focus

  Curing cystic fibrosis and improving quality of life for patients

• Founding Location

  Philadelphia, Pennsylvania, United States

• Philanthropic Model

  Venture Philanthropy

• Major Financial Asset

  $3.3 billion from the sale of drug royalty rights in 2014

Timeline

• Cystic fibrosis is first recognized as a distinct disease by Dorothy Andersen. (Source: Wikipedia)

  1938-01-01

• The Cystic Fibrosis Foundation is established by a group of volunteers in Philadelphia. (Source: Wikipedia)

  1955-01-01

• The FDA approves Kalydeco (ivacaftor), a therapy developed with significant foundation support. (Source: Wikipedia)

  2012-01-31

• The Foundation sells its royalty rights for cystic fibrosis drugs for $3.3 billion to Royalty Pharma. (Source: Wikipedia)

  2014-11-19

• The FDA approves Trikafta, a triple-combination therapy capable of helping up to 90% of CF patients. (Source: Wikipedia)

  2019-10-21

• The foundation is cited in the All-In Podcast as a successful example of venture philanthropy during a discussion on OpenAI's structure. (Source: All-In Podcast Episode 169)

  2024-03-01

Cystic fibrosis

Cystic fibrosis (CF) is a genetic disorder inherited in an autosomal recessive manner that impairs the normal clearance of mucus from the lungs, which facilitates the colonization and infection of the lungs by bacteria, notably Pseudomonas aeruginosa and Staphylococcus aureus. CF is a rare genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. The hallmark feature of CF is the accumulation of thick mucus in different organs. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections. Other signs and symptoms may include sinus infections, poor growth, fatty stool, clubbing of the fingers and toes, and infertility in most males. Different people may have different degrees of symptoms. Cystic fibrosis is inherited in an autosomal recessive manner. It is caused by the presence of mutations in both copies (alleles) of the gene encoding the cystic fibrosis transmembrane conductance regulator (CFTR) protein. Those with a single working copy are carriers and otherwise mostly healthy. CFTR is involved in the production of sweat, digestive fluids, and mucus. When the CFTR is not functional, secretions that are usually thin instead become thick. The condition is diagnosed by a sweat test and genetic testing. The sweat test measures sodium concentration, as people with cystic fibrosis have abnormally salty sweat, which can often be tasted by parents kissing their children. Screening of infants at birth takes place in some areas of the world. There is no known cure for cystic fibrosis. Lung infections are treated with antibiotics which may be given intravenously, inhaled, or by mouth. Sometimes, the antibiotic azithromycin is used long-term. Inhaled hypertonic saline and salbutamol may also be useful. Lung transplantation may be an option if lung function continues to worsen. Pancreatic enzyme replacement and fat-soluble vitamin supplementation are important, especially in the young. Airway clearance techniques such as chest physiotherapy may have some short-term benefit, but long-term effects are unclear. The average life expectancy is between 42 and 50 years in the developed world, with a median of 40.7 years, although improving treatments have contributed to a more optimistic recent assessment of the median in the United States as 59 years. Lung problems are responsible for death in 70% of people with cystic fibrosis. CF is most common among people of Northern European ancestry, for whom it affects about 1 out of 3,000 newborns, and among which around 1 out of 25 people is a carrier. It is least common in Africa and Asia. It was first recognized as a specific disease by Dorothy Andersen in 1938, with descriptions that fit the condition occurring at least as far back as 1595. The name "cystic fibrosis" refers to the characteristic fibrosis and cysts that form within the pancreas.

Web Search Results

• Cystic Fibrosis Foundation - Wikipedia

  The Cystic Fibrosis Foundation (CFF) is a 501(c)(3)(3) "501(c)(3)") non-profit organization in the United States established to provide the means to cure cystic fibrosis (CF) and ensure that those living with CF live long and productive lives. The Foundation provides information about cystic fibrosis and finances CF research that aims to improve the quality of life for people with the disease. The Foundation also engages in legislative lobbying for cystic fibrosis. ## History [edit] [...] The Foundation was established in 1955 by a group of volunteers in Philadelphia, Pennsylvania. In addition to providing grants "Grant (money)") for research into cystic fibrosis and supporting clinical trials, the foundation promotes and accredits 115 specialized centers for treatment of individuals with cystic fibrosis. The Foundation has over 80 chapters and offices across the United States. [...] The Cystic Fibrosis Foundation has been a pioneer of cystic fibrosis treatment, having played a major role in the development and use of five FDA-approved therapies, including ivacaftor (Kalydeco). The latest FDA approved drug is Trikafta, which was passed by the FDA in 54 days and is able to help up to 90% of CF patients. In 2014, the Cystic Fibrosis Foundation sold the rights to the royalties of the drugs for $3.3 billion, twenty times the Foundation's 2013 budget.

• Cystic Fibrosis Foundation - GuideStar Profile

  The Cystic Fibrosis Foundation (CF Foundation) is the world’s leader in the search for a cure for cystic fibrosis, a life-threatening genetic disease that affects approximately 40,000 people in the United States and 105,000 people in 94 countries worldwide. Although a rare disease, more than 10 million Americans are carriers of the defective CF gene. In people with cystic fibrosis, a defective gene causes a thick buildup of mucus in the lungs, pancreas, and other organs. In the lungs, mucus [...] 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 [...] Today, the CF Foundation is recognized globally in the fight against cystic fibrosis, fueling extraordinary medical and scientific progress. Working alongside the CF community, the CF Foundation has fostered the development of nearly 20 CF treatments, an unprecedented number in a short span of time, and helped add decades of life for people with CF. Due to advances in medical care and therapeutics, the life expectancy of someone born with CF has more than doubled in the last 30 years.

• Cystic Fibrosis Foundation | LinkedIn

  The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for people with cystic fibrosis, a rare, genetic disease in which a defective gene causes a thick buildup of mucus in the lungs, pancreas, and other organs. The buildup of mucus can lead to extensive lung damage, respiratory failure, malnutrition, liver disease, and gastrointestinal issues, among many other complications. Recognized globally, the Cystic Fibrosis Foundation has led the way in the fight against cystic [...] provides a rewarding experience for all members of our team. We strive to be an organization where everyone is welcomed and where talented individuals from all backgrounds have the opportunity to thrive. The CF Foundation is a nonprofit, donor-supported organization and an accredited charity of the Better Business Bureau's Wise Giving Alliance. Please visit us at www.cff.org. [...] Cystic Fibrosis Foundation (1d): This week, the Cystic Fibrosis Foundation represented the CF community in a new report from the National Association of Insurance Commissioners (NAIC) : “Recommendations for States’ Efforts to Mitigate Harms Caused by Federal Policy Actions.” As a consumer representative to NAIC, the Foundation brings the voice of people with CF to critical policy discussions — ensuring that rare disease communities, like CF, can maintain access to affordable, high-quality

• Cystic Fibrosis Foundation | VolunteerCNY.org

  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. We are 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 [...] ## What We Do 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. We host several events and programs throughout the year to support critical funding needed in pursuit of a cure. In Central New York, we host three walks across the region, Xtreme Hike, a golf tournament, and our signature tasting event, Savoring the Salt City. ## Agency Needs Is Ongoing CNY Finest

• Our Mission | Cystic Fibrosis Foundation

  Skip to main content Our 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. 4 min read In this article Summary [...] We are 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. We are driven by a dream that one day, not one person will lose a life, child, sibling, parent, or friend to cystic fibrosis, and we are determined to succeed. [...] We help people with cystic fibrosis and their families get the tools and support they need to lead healthy lives today. The incredible strides we’re making in research and drug development mean nothing if people with CF don’t have access to the care and therapies they need. We’re working diligently to ensure all people with CF have access to the best medical, educational, and financial resources available.