Al Lee is a funny, creative 21-year-old who happens to have Cystic Fibrosis. He was diagnosed very young, and over the years he has taken lots of medications, has had multiple surgeries and many long hospital stays, and even had to do kidney dialysis for a short while.
When he was 2 and his sister Rhianna was 11, their cousin Donnal died from complications from Cystic Fibrosis, even though he had received a double lung transplant a year earlier. It was the first funeral Rhianna had ever attended, and she decided she wanted to learn about CF and try to find a way to help Al and others with the disease. She set her sights on Duke, and in 2012 received her acceptance letter.
While she was a freshman, one of her professors connected her to scientists at the UNC Cystic Fibrosis Center and she began working there three days a week. After graduation, she became a full-time research technician there. During that time, her cousin Michelle lost her fight with CF. She was only a few years older than Rhianna. In 2018, Rhianna enrolled in the PhD program within the UNC-Chapel Hill Department of Cell Biology and Physiology to put all her focus into finding treatments and eventually a cure for CF.
The last few years have brought a lot of changes for our family. In January of 2020, Al started taking Trikafta, a new triple combo therapy for Cystic Fibrosis that was approved in November 2019 and Al has had amazing improvements in his health. In fact, he hasn’t had any hospitalizations at all since late 2019! Unfortunately, about 10% of people with CF are unable to benefit from taking Trikafta, so there is still much work to be done. Rhianna is graduating in just a few weeks, and two weeks later, she's marrying Jake Ferris, a wonderful man the whole family loves. Al can't wait to be a groomsman! And we can’t wait to see what “Dr. Rhianna Lee Ferris” will discover for the CF community, especially those that still don’t have any relief.
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 everyone with cystic fibrosis.
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.