July 2011

Raising Her Voice for a Cure

Raising Her Voice for a Cure - July 2011 - Connections - CF Foundation 
Julia Rae, 19, says the
feeling she gets when on stage helps
her get through tough days. The
aspiring performing artist has CF and
uses her voice to raise awareness and funds for cystic fibrosis.

When Julia Rae, 19, takes hold of the microphone and meets the eyes of her audience, a current runs through her body, and her nervousness disappears. “I feel unstoppable when I’m on stage,” she says. “It’s electrifying.”

On the days when the challenges of life with cystic fibrosis seem to outweigh the thrill of performance and she feels like giving up, Julia Rae’s dream of becoming a singing star inspires her to keep her going.

After back-to-back hospitalizations last spring, Julia Rae questioned whether her dream of being a singer was meant to be. “I asked myself, ‘Why was I given a voice and a fatal lung disease?’”

The answer came to her quickly and has given her dream new meaning: “I need to use my voice to raise awareness and funds for CF.”

Balancing act

Julia Rae was diagnosed with CF before she was born through prenatal testing. As a child, Julia Rae shared treatment time with her older brother William, who also has CF. “Growing up with CF was less of a struggle because I had someone close to me going through the exact same thing,” she says.

Julia Rae’s mom says she was singing her sentences when she began to talk, and at age 17, she packed her bags and embarked on a cross-country trip to Los Angeles, leaving her life in Malvern, Pa., to pursue her dream. She secured a recording contract and is honing her skills with renowned producers and vocal coaches, singing up to three hours a day.

Before she starts her day at the studio, Julia Rae religiously does her breathing treatments, including two inhalers and a nebulizer while wearing a vibrating vest for 30 minutes. She repeats the same routine two more times before the end of the day. “I make my treatments a priority because I know if I skip a treatment, I’m more likely to be hospitalized and miss out on the things I like to do.”

In 2010, several hospitalizations made her worry she’d have to give up singing, but she fought hard and even moved home to spend the summer regaining her strength in her hometown of Malvern, Pa.

This month, Julia Rae proudly celebrates a year free of hospitalization.

A meeting of two worlds

Julia Rae was very private about her disease as a child, and kept her life with CF separate from her life at school and extracurricular activities. “Most of the directors of the musicals I was in growing up had no idea I had CF, even after the show ended,” she says. “I didn’t want anyone to pity me, or say ‘She can’t do that because she has CF.’”

Things changed when Julia Rae began singing for the CF community at Cystic Fibrosis Foundation events. “I formed relationships with CF parents and patients, and though I haven’t met all of them in person, we have such a strong relationship and empower each other through our own battles with CF.”

Today, Julia Rae is using her voice to raise funds and awareness for CF. She began her own non-profit organization, Singing at the Top of My Lungs, to encourage children and teens to follow their dreams, and to help benefit the CF Foundation’s search for a cure and control for CF.

“There’s no denying what the CF Foundation does to help all people with CF,” Julia Rae says. “The proof is in the numbers and the increased life expectancy.” 

Hope for the future

As Julia Rae works on tracks for her self-titled debut album, she’s filling up scrapbooks with costume sketches and set-design ideas for her first major tour. “I dream that someday I will be on stage singing my music for sold-out crowds without worrying about doing treatments because a cure for CF has been found.”

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