Cystic Fibrosis is a genetic disease that affects the lungs, pancreas, and other vital organs. Hard to treat bacterial infections in the lungs lead to irreversible lung damage. Thick mucus in the pancreas leads to digestive issues and difficulty gaining and maintaining one’s weight. There have been many advances in the treatment and management of CF, but a cure has not been found.

The journey towards a cure is why I am walking in the Great Strides Walk on May 9th. This journey is personal to me as my children, Hayden and Maggie, have CF. Hayden is 25 and currently living in Nashville and attending Vanderbilt University pursuing his doctorate in Mechanical Engineering. Maggie is 22 and currently living in Birmingham. She is attending Jefferson State pursuing a culinary degree with an emphasis on pastries. She is working at Bandit, a French pastry shop in the downtown area.

They both culture a drug-resistant bacteria in their lungs called NTM. Maggie is currently on a rigorous antibiotic regimen to treat the NTM which has been slow to respond to therapy. This past year has been a journey balancing the treatment of bacteria while managing the effects of the drugs on her body. Damage to her lungs led her to an evaluation with the Duke Transplant team last spring. It was determined that she is too early for transplant but will be closely monitored by them and her team at UAB to be ready for transplant if the time comes.

They are both on the newest modulator, Alyftrek, which is designed to correct the defect causing CF at the cellular level. This drug will not reverse damage to the lungs but will hopefully provide stability and preserve the function that they have. This drug is not perfect and does not work for everyone – that is why we must continue to fund the research that is ongoing to make CF stand for CURE FOUND.