Statements
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.
The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis, a life-threatening genetic disease that affects more than 40,000 people in the United States and nearly 100,000 people worldwide. Although CF is a rare disease, more than 10 million Americans are symptomless carriers of the defective CF gene.
The CF Foundation accredits and helps fund a network of more than 130 care centers, including 7 programs across Tennessee. These centers are staffed with highly trained multidisciplinary teams who partner with patients and families to apply the latest medical evidence and established guidelines to provide comprehensive care, including mental health support.
The CF Foundation works to support our community through our free personalized, one-on-one service, Compass, that provides people living with cystic fibrosis, their families, and their care teams with a partner in dealing with financial, legal, insurance, and other challenges related to life with CF. Additionally, the foundation supports several community programs.
Real progress has been made, but the lives of people with CF are still cut far too short. There is more critical work to be done to improve health, extend the lives of those with CF, and to reach our ultimate goal of a cure for all people with CF.
All funds received benefit the mission of the CF Foundation.
Background
When the CF Foundation was established in 1955, most children born with CF did not live long enough to attend elementary school. Little was known about the disease and no effective treatments were available. To save their children and help all those with CF, a concerned group of parents formed the CF Foundation. Their goals were to advance the understanding of CF, develop new treatments, provide specialized medical care, and find a cure for this devastating disease.
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 more than a dozen 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 doubled in the last 30 years.
Despite this progress, many people with CF do not benefit from existing therapies, either because their disease is too advanced or because their specific genetic mutations will not respond. Those who can benefit from current therapies continue to face challenging complications, which lead to hospitalizations, missed school and work, and significant interruptions in their daily routine. Many children and adults with CF still face the sobering prospect of a shortened lifespan. And while the CF Foundation has many potentially beneficial treatments in its therapeutics development pipeline that tackle the challenges of CF, typically only one in five drugs that enter clinical trials receives approval from the U.S. Food and Drug Administration and enters the marketplace. Our vision is a cure for every person with cystic fibrosis and a life free from the burden of this disease. We will not leave anyone behind.
Impact
Making an Impact Through Our Innovative Research Structure
Working alongside the CF community, the CF Foundation drives extraordinary results.
• More than doubled the life expectancy of those living with CF over the past three decades by championing high quality, specialized care, and therapeutic progress.
• Currently collaborating with hundreds of scientists working at 300+ labs across the country.
• Established a globally recognized care model that includes 130+ accredited CF care centers to deliver high quality, specialized care. Since 2014 the Foundation has increased funding for CF care by 120 percent. Today, we continue to evolve our care model to meet the emerging needs of people with CF as they live longer.
• Supported pioneering research that led to the discovery of the gene that causes cystic fibrosis. Fast forward to 2023, and today there are six genetic-based clinical trials underway, or which will begin in the next 18 months.
• Launched the Therapeutics Development Network (TDN), a model for research networks globally. Today the TDN conducts 60+ clinical trials annually at 91 research centers, comprising the largest CF clinical trials network anywhere in the world. This network is the hub for advances in key areas of focus such as research on infections, advanced lung disease, and nonsense and rare mutations.
• Pioneered the use of venture philanthropy, a research funding model that has spurred the discovery of multiple breakthrough therapies that target the underlying cause of CF. The venture philanthropy model is admired and emulated by nonprofits everywhere for its astonishing capacity to drive results. Today, we are investing aggressively in CF research and care. This includes advancing our Path to a Cure, an ambitious research initiative that challenges leading researchers and drug developers to accelerate the pace of progress in CF.
• Fostered the development of more than a dozen CF treatments and added decades of life for those with CF. Currently, there are 40+ therapies in the drug development pipeline with potential to significantly improve the lives of those with CF.
• Champion policies to protect the CF community. Advocacy for high-quality specialized care for people with CF and their families, has resulted in historic wins - including protections for pre-existing conditions and mandatory newborn screening for CF in all 50 states.
• Supports the CF community at every step of their journey through Compass, a free service that helps CF families navigate insurance, financial, legal, and other issues. Each year, Compass fields approximately 14,000 calls from CF community members.
• Partnered with the CF community to continuously learn from and engage with those living with this disease, resulting in numerous programs that support people with CF no matter where they are on their journey. Today, thanks to the community, we have increased our community engagement efforts with approximately 1,000+ annual events nationwide and new community-driven programs that enhance quality of life - such as BreatheCon, CF Peer Connect, ROSE UP, and Community Voice.
Needs
For the first time, the median predicted survival age for a person born with CF today is 56, and with continued scientific progress, we expect that number to climb. While this represents a dramatic improvement from the 1950s, when a child with CF rarely lived to attend elementary school, it is still not long enough. Every person with CF deserves to live a long, healthy life. Many children and adults with CF still face the sobering prospect of a shortened lifespan.
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Modulator therapies, such as the triple-combination therapy Trikafta™, have the potential to transform life with CF for many people by attacking the underlying cause of cystic fibrosis. Yet not everyone will benefit from these treatments either because their disease is too advanced or because their mutations will not respond. The CF Foundation will not rest until we find a cure for every person with cystic fibrosis.
Service Categories |
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| Primary Category: | Diseases, Disorders & Medical Disciplines - Birth Defects & Genetic Diseases |
| Secondary Category: | Health Care - Health Support |
| Tertiary Category: | Civil Rights, Social Action, Advocacy - Disabled Persons' Rights |
Areas Served
The work of the CF Foundation benefits all with CF across the country and even the world. In Tennessee, we have approximately 800 individuals who seek care at one of our 7 CF Care Centers in the state. Two of our care centers are in Davidson County - one for adults and one for pediatrics. We host around 10 events annually across the middle Tennessee region and work with hundreds of volunteers to do so.
| TN - Davidson |
| TN - Montgomery |
| TN - Rutherford |
| TN - Williamson |
| TN - Lawrence |
| TN - Coffee |
| TN - Rutherford |
| TN - Sumner |
