Simplified: Despite a lifelong respiratory illness, Ashley Ballou-Bonnema has made a career out of singing. She founded nonprofit Breathe Bravely to share the healing powers of singing with cystic fibrosis patients worldwide, and we caught up with her ahead of the nonprofit's annual Backyard Bash – which will take place Aug. 13 at Levitt at the Falls.

Tell me more

Cystic fibrosis is a chronic disease that affects primarily the lungs, but can also affect the pancreas and other organs.

  • It's a progressive, genetic disorder that affects about 40,000 people nationwide and more than 100,000 globally, according to the Cystic Fibrosis Foundation.

Ballou-Bonnema credits two things with saving her life: singing, and her older brother, Nathan Ballou.

Screenings for cystic fibrosis have improved in recent decades, but Ballou-Bonnema doesn't think her diagnosis would've been found at birth had it not been for her older brother, who was diagnosed at age 7, shortly after she was born.

  • The disease took his life four years later.

The visits to see her brother as he sought treatment were among Ballou-Bonnema's first memories of her love of singing.

"My dad and I would sing and listen to music driving to see my brother," she said.

How she learned to breathe

As she grew up, Ballou-Bonnema used singing as a way to stay in-tune with her lungs, and, consequently, her cystic fibrosis. She said in college she would call her doctor if she noticed she couldn't sing as long without taking a breath as she had the day before.

  • And more often than not, she was right. She knew exactly when something was wrong.

Throughout most of her life, Ballou-Bonnema largely kept her illness secret from most of the people around her. She didn't share it with her friends or teachers when she went on to study music at Augustana College.

"I wanted to be measured from the same standard as my peers," she said. "I didn't want to be a good singer 'for someone with cystic fibrosis.'"

As she continued singing through college and graduate school, her disease worsened.

  • At one point, Ballou-Bonnema saw her lung capacity go from 45% to 25% in a month. Doctors began bringing up conversations about lung transplants, and she felt betrayed by her body.
"It was this idea of, 'will I be able to sing again (with a transplant)?'" she said. "Will I feel like living if I'm unable to do what makes me feel alive?"

She said no to a transplant, and as she continued with grad school and continued singing, she saw her lung function improve.

How she's helping others breathe (bravely)

Ballou-Bonnema initially started Breathe Bravely in 2014 as a blog to share her journey with cystic fibrosis.

  • A year later, she turned Breathe Bravely into a nonprofit to teach singing lessons to people with cystic fibrosis.

Because two people with cystic fibrosis cannot be in the same place due to the risk of getting one another sick, Breathe Bravely's lessons all take place virtually.

  • In 2019 (before everyone was on Zoom all the time), Breathe Bravely hosted its first virtual choir, in which people with cystic fibrosis across the world gathered to sing original pieces Ballou-Bonnema composed.
"I think what Ashley's doing in that nonprofit is really unlike any nonprofit I've ever encountered," said Maren Engel, a friend of Ballou-Bonnema and fellow musician who's been teaching with Breathe Bravely since the nonprofit began. "It combines a health need with the creative side of things – it really encompasses all areas."

Tell me more about the nonprofit today

Today, Breathe Bravely is running its 20th session and has served hundreds of students

  • Each year, the nonprofit holds three 10-week sessions in which about 35 to 40 students ages 12 and up take regular singing lessons.
"It allows people to feel like they own their breath," Ballou-Bonnema said. "It's not about how much breath fills your lungs. It's what you do with that breath."

How you can help

Go to the Backyard Bash event on Aug. 13 at Levitt at the Falls.

  • The event will feature multiple musicians, including Georgia singer Elena Goodrow, a student of Breathe Bravely who's now making her career as a musician.

You can also donate to Breathe Bravely here. The nonprofit does not charge its voice lesson participants, but it costs about $500 per student per session.