Susan Lee

My son Al Lee was diagnosed with Cystic Fibrosis in 2001, just a few months after he was born. If you don't know what Cystic Fibrosis is, it's an inherited chronic disease that affects the lungs and digestive system. For most of his life, Al spent hours a day doing breathing treatments, took over a dozen different medications and had frequent 2-week hospital stays to treat lung infections and other complications.

All that changed a few years. In January of 2020, Al started taking Trikafta, a new triple combo therapy for Cystic Fibrosis that was approved in November 2019. It was thought that it would improve lung function and reduced hospitalizations for about 90% of people with CF. Almost immediately, Al  had amazing improvements in his health. At the end of the first week of taking Trikafta, his lung function went from the 50's to almost 70 and his chronic cough eventually went away. What we did not expect was his weight increasing greatly and a year later, we were able to have his g-tube taken out. He was also able to quit taking his biweekly Xolair injections for ABPA, and after 2 years of no hospitalizations (which is now 4 1/2 years) he had his port removed! The four 45-minute breathing treatments he did each day were replaced by just one daily 15-minute treatment, which as of a week ago, were able to be discontinued entirely.

Although we are so grateful for the many improvements in Al's health, we can't forget about the CF population that Trikafta doesn't help. Fortunately, similar therapies are in the works that can benefit all. His big sister, Rhianna, who received her PhD in cell biology last year, is involved on some of these therapies in her work at Duke University. If you would like to see an interview that was done last year with her and Al about her research, here is a link:

Endeavors: December 2023 (unc.edu)

We believe with fundraising, increased awareness, and research and advocacy, everyone who has CF will thrive and eventually an actual cure will soon be found. Until all those born with CF can lead a normal life, we can't stop. Too many lives depend on it.

Please consider supporting the Cystic Fibrosis Foundation by making a donation to our Great Strides fundraising campaign today and sharing this page. Your gift is 100-percent tax deductible, and 90 cents from every dollar goes directly towards supporting life-saving research and medical progress.Thank you for helping add tomorrows to the lives of people with cystic fibrosis.