Living With Cystic Fibrosis

“I always say that singing and performing was as much a part of my DNA as cystic fibrosis.” Julia RaeFrom the moment Julia Rae could speak, she was singing, and from the moment she could dream, she was already imagining a bigger stage. As her mother fondly recalls, at just two years old, Julia was watching Barney on TV and asked, “How do I get in there and do that with him?” That instinct, that pull toward performance, was never just about the spotlight. For Julia Rae, the stage became her sanctuary, and later, her platform for purpose.Diagnosed with cystic fibrosis at birth, Julia’s life has never followed an easy script. But instead of letting a chronic illness limit her, she embraced the full range of her voice, as a singer, actress, writer, and advocate. She didn’t just want to perform; she wanted to make a difference.At 16, Julia founded Singing at the Top of My Lungs, a nonprofit inspired by her own hospital experiences. Initially, the organization supported both CF research and creative therapies at ch