KC White Shines a Light on Cystic Fibrosis and Ongoing Efforts for a Cure

Cystic fibrosis (CF) is a rare and progressive genetic disease that currently affects approximately 40,000 individuals in the United States. It stems from a defective gene inherited from each parent and afflicts people of all races and ethnicities. Recently, KC White, the Board Chair of the Cystic Fibrosis Foundation, spoke about the disease, her personal journey, and the Foundation's efforts during a nationwide satellite media tour.

CF is a life-shortening condition that prevents the body from clearing mucus, leading to lung infections, poor nutrition, and lung disease, among other complications. When CF was first identified, it was considered a fatal pediatric disease. However, due to significant advancements in treatment and high-quality care, the life expectancy for someone born with CF today has increased to 56 years. Despite this progress, not all individuals with CF benefit equally from these advancements.

KC White, the first person with CF to serve as the chair of the Cystic Fibrosis Foundation's Board of Trustees, was diagnosed with the disease at the age of three. Elected as the chair in 2022, White has been an active volunteer and advocate for the Foundation since childhood. Her journey with CF has been transformative, particularly due to recent treatments known as modulators, which have significantly improved the health of about 90% of the CF population, including herself. These advancements have presented new challenges in areas such as careers, finances, and family life.

The CF Foundation remains dedicated to finding a cure and ensuring that all individuals with CF can lead long, fulfilling lives. The organization aggressively funds research and drug development, advances high-quality specialized care, and supports the CF community through various programs and connection opportunities. Additionally, the Foundation emphasizes the importance of genetic therapies as a pathway to transformative treatments for the entire CF population.

The Foundation's efforts are crucial, as it funds more CF research than any other organization. Nearly every CF drug available today has been made possible through the Foundation's support. The Foundation also accredits a national network of over 130 CF care centers, recognized by the National Institutes of Health as a model of care for chronic diseases. The organization's impact extends across the country, thanks to the work of nearly 70 local chapters.

For more information, visit CFF.ORG