Cystic fibrosis (CF) is a rare, progressive, and genetic disease that currently impacts approximately 40,000 people in the United States. The disease results from a defective gene inherited from each parent and affects people of all races and ethnicities. KC White, Board Chair of the Cystic Fibrosis Foundation, recently participated in a nationwide satellite media tour to discuss CF, her personal journey, and the Foundation's efforts to advance care and treatment options.
A video accompanying this announcement is available at: https://youtu.be/8wj8u0JEqLU
CF is a life-shortening disease that prevents the body from clearing mucus, leading to lung infections, poor nutrition, lung disease, and various other challenges. Initially considered a fatal pediatric disease, significant advancements in treatments and high-quality care have extended the life expectancy for individuals born with CF today to 56 years. Despite this progress, not all people with CF equally benefit from these advancements, highlighting the need for continued efforts.
KC White, diagnosed with CF at age 3, has been a dedicated volunteer and advocate for the Cystic Fibrosis Foundation since childhood. Elected as the chair of the Foundation’s Board of Trustees in 2022, White is the first person with CF to hold this position. Her personal journey underscores the transformative impact of recent treatments, including modulators, which have significantly improved the health of about 90% of the CF population, including White herself.
However, these health improvements bring new challenges, such as navigating careers, finances, and family life. The Cystic Fibrosis Foundation is not only focused on advancing research, particularly in genetic therapies, but also on supporting the CF community through various programs and connection opportunities.
The Foundation remains committed to finding a cure and enabling all people with CF to lead long, fulfilling lives. It aggressively funds research and drug development, advances high-quality, specialized care, and partners with and advocates for the CF community.
For more information, visit CFF.ORG
