Cystic Fibrosis Foundation Sheds Light on Rare Disease and Pursuit of a Cure
TL;DR
Advancements in treatments like modulators have transformed the health of 90% of the CF population, providing a competitive advantage for those with CF.
The Cystic Fibrosis Foundation funds research, drug development, and high-quality care, partnering with and advocating for the CF community.
The Foundation is committed to finding a cure, providing long, fulfilling lives for all people with CF, and supporting the CF community in all aspects of their lives.
KC White, the first person with CF to serve as board chair, inspires as an advocate and volunteer, promoting progress for the CF population.
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Cystic fibrosis (CF) is a rare, progressive, and genetic disease that currently affects about 40,000 people in the United States. The Cystic Fibrosis Foundation, a donor-supported nonprofit organization, is leading the relentless pursuit of a cure for this life-shortening condition. The Foundation is committed to providing all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, advancing high-quality, specialized care, and partnering with and advocating for the CF community.
KC White, the newly elected chair of the Cystic Fibrosis Foundation's Board of Trustees, is the first person with CF to serve in this role. Diagnosed with CF at age 3, White has been a committed volunteer and inspiring advocate for the Foundation since childhood. She recently participated in a nationwide satellite media tour to discuss the disease, her personal journey, and the Foundation's efforts.
CF is the result of a defective gene inherited from each parent, and it can impact people of all races and ethnicities. The disease prevents the body from clearing mucus, leading to lung infections, poor nutrition, lung disease, and various challenges affecting every aspect of life. While recent treatments known as modulators have transformed the health of about 90% of the CF population, including KC White, there is still a long way to go, and not all people with CF equally benefit from this progress.
The Cystic Fibrosis Foundation funds more CF research than any other organization, and nearly every CF drug available today was made possible because of its support. The organization also supports and accredits a national network of over 130 CF care centers recognized by the National Institutes of Health as a model of care for a chronic disease. Additionally, the Foundation manages support programs and fosters connection opportunities for the CF community.
Based in Bethesda, Md., the Foundation's impact is made possible by the work of nearly 70 local chapters across the country. For more information, visit CFF.ORG.
Curated from News Direct
