For the past four years, I have had the honor of working for the Cystic Fibrosis Foundation. I have met some incredible families and in the short time I’ve been with CFF, watched lives change dramatically because of drugs and therapies that have been brought to the market. Groundbreaking therapies, that were a direct result of fundraising dollars that had been so generously given years ago.
Despite the advances, data from the CF Registry in 2021 show that of the deaths reported, half occurred before the age of 34, meaning too many people with CF miss the opportunity to finish school, begin careers, start families, and reach other milestones.
For those living with cystic fibrosis, many still face significant challenges, including frequent hospitalizations, complications such as CF-related diabetes and depression, and time-consuming treatment plans that can take 2 to 3 hours a day.
So, we still have a long way to go — particularly for those who have mutations that result in faster and more severe disease progression, who do not yet have disease-modifying treatments approved to address their mutation, or who cannot benefit from modulator therapy due to advanced disease.
The Cystic Fibrosis Foundation has proven that research works, and results are driven by continued funding and science. This is why I continue my fundraising efforts and I hope you can join me. Thank you so much!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.