Running for Her Life
Founder of Rock CF nonprofit fights back against genetic lung disease
Doctors once gave Emily Schaller little chance to live past middle school. Now the 33-year-old is training for a 500-mile bike ride.
Photograph by Martin Vecchio
There’s something about Emily Schaller. Whenever she embarks on one of her multi-mile runs — which she does practically every day when she isn’t pumping her bicycle on two- to three-hour rides — community members grin or wave as she goes by. Some who see her regularly along her routes even have been known to give her a hug.
“They have, but I’m thinking about $5 a hug,” jokes Schaller, her infectious laugh accentuating the twinkle in her eyes. “It’s for a good cause, right?”
To legions of people in metro Detroit and worldwide, Schaller is the perpetually upbeat, pixie-ish face of her cause. The Grosse Ile native is 33; considering that doctors gave her zero chance to live past middle school when she was diagnosed with the lung disease cystic fibrosis at 18 months, why not smile?
“I feel better than I have my whole life, and that’s not supposed to happen with CF because it’s progressive,” she says.
“I’m starting a retirement fund, which I never thought I would need. It’s crazy.”
Schaller, founder and CEO of Detroit-based Rock CF Foundation, credits her astonishing physical improvement to key lifestyle additions: running and cycling.
Not that she embraced the loneliness of the long-distance runner at first. “I was the couch the couch potato sat on before starting this,” Schaller says, laughing.
“Before 2007 I was the most inactive, couldn’t-run-a-block person ever. My message is, anyone can do it. It takes time and it’s going to suck for a bit, but stick with it. I hated running at first, but now it’s who I am.”
Who she was: drummer in the all-female rock band Hellen, inspiring her foundation’s name. “We were successful for Detroit,” she says. “We played five-and-a-half years, every bar in Hamtramck, Detroit, Birmingham. Five girls in a band, people want to see you play.” And what better environment for a person with a lung condition than smoke-filled bars every night? “It was fun, but that was the most unhealthy time in my life,” says Schaller. “I wasn’t taking care of myself. That’s when I was at my sickest.”
Monthlong stays at Children’s Hospital of Michigan two or three times a year became commonplace. When Schaller finally became “sick of being sick,” running emerged as a reasonable, if initially undesirable, alternative.
“But I switched to an adult hospital at U of M and my doctor’s a runner,” she says. “He said, ‘This is great.’ ”
“I’d like to think I was one reason she started running,” says Dr. Thomas Sisson, pulmonologist and professor of internal medicine at University of Michigan Health System, Schaller’s physician for 10 years. “When I met her, Emily’s lung function was about 60 percent of what it should have been, and she was requiring antibiotics to treat lung infections.
“Now she is in the mid-80s of predicted range. I give a presentation on her case to the medical students.”
On a typical day, Schaller’s alarm goes off at 5:47 a.m.; by 6 she’s running with friends or by herself or astride her bike. She rides her cycle nearly 100 miles a week and runs 20 to 30 miles. She’s in training for a 500-mile bike ride from Maine to Manhattan. Yet Schaller still requires daily breathing treatments and utilizes a special vest that shakes her violently to loosen mucus in her lungs. She also volunteered to test a new mutation-specific drug called Kalydeco among her medications that she says has helped greatly.
“We were part of the original study. [Emily] didn’t know if she was on the drug or a placebo,” Sisson says. “But she felt so much better so quickly, she was pretty sure she was on the Kalydeco.”
In the research model pioneered by the Cystic Fibrosis Foundation, money raised by the foundation is paid to pharmaceutical companies to develop CF drugs. The practice led to Kalydeco.
“Now cancer and diabetes are modeling their research after the way the CF Foundation has done it, and those diseases affect millions,” Schaller says. “It’s like we’re leading the way with just a small group of people, but they’re people who are dedicated and what we’re doing actually works. It’s changing lives.”
It’s a lot to do, but “I never had the ‘why me?’ crap,” she says. “My parents, we didn’t have time for that so we didn’t do it.”
The youngest of Lowell and Debbie Schaller’s three children, Emily is the only daughter — and the only one with CF. “We cried for one day, then said, ‘We’re going on,’ ” Debbie recalls. “Both her dad and I were teachers for 30 years. You build kids up, help them find their niche, and let them go.”
Emily’s niche is Rock CF headquarters across from the Fisher Building, a cozy space resembling a fashion boutique. When she’s not making speaking appearances or consulting with CF patients, parents, or medical personnel, she’s shipping her logo merchandise to 20 countries and all 50 states. Proceeds from those items and events like her Rock CF Rivers Half Marathon, marking its sixth year on Grosse Ile in March, provides funding to send free running shoes to CF patients and partner with fellow organizations like the Cystic Fibrosis Foundation Michigan Chapter.
“She was the sickest person I ever met with cystic fibrosis,” remembers Michigan Chapter Executive Director Shelly Francis. “And now she’s one of the healthiest. And always this amazing spirit, pure joy to be around.
“I use her to gauge people. I tell them, ‘If you don’t like Emily Schaller, you have a serious personality flaw.’ ”
About Cystic Fibrosis
- Cystic fibrosis is an inherited disease characterized by buildup of thick, sticky mucus in the body.
- It mostly affects the lungs, but also can damage the liver, kidneys, and other organs.
- Approximately one in 30 people carry the CF gene, yet there are only 30,000 reported cases of CF in America, about 1,500 in Michigan.
- There is no cure, but treatment can help.