“Whaddaya think?” asks Emily Schaller, a sartorial delight in her blue-soled nubuck shoes, pink pants, denim shirt and bowtie. The bowtie is for Rock CF’s inaugural Bubbles and Bowties fundraiser, currently in full party mode under a white tent in a Grosse Pointe, Mich., parking lot. Rock CF is Schaller’s nonprofit organization that raises money and awareness for cystic fibrosis.
Everyone at the party is dressed up, drinking wine and champagne and beer, and leaning against the high-top tables refashioned from Packard Automotive Plant parts; an honest post-industrial chic only Detroit could produce. A band begins setting up in another corner of the tent. Schaller used to play drums in her 20s for the all-girl rock band, Hellen, a catalyst for her first fundraising idea. For her 21st birthday, Schaller convinced her brother, who played in another Detroit band, to pull together some musicians to raise money for the Cystic Fibrosis Foundation.
“We sold out our Just Let Me Breathe event with 550 people,” Schaller says. “It was a great fundraiser, but it was more exciting that we brought together a group of 18- to 35-year-olds who wouldn’t normally fundraise for CF.” That sparked something in Schaller—to get people to care about a disease they once knew nothing about—and she created Rock CF in 2007.
Schaller has an absolute magnetic personality. Friends say that cops call out her name when she runs and strangers in restaurants will randomly comment, “Oh, that girl is fun.” It’s the reason so many cystic fibrosis centers fly her around the country to speak to their staff. Doctors, nurses, social workers and dieticians at the clinics hear about her transformation since taking up running, and Schaller speaks to families afterward. Weeks and months later, they still stay in touch.
“They actually trust me and say, ‘Let’s ask Emily,’” Schaller says. “I guess if you’ve had something your entire life, you’re an expert in the disease. It’s a blessing in disguise because it’s my career now. I figure if I can do something I love and change people’s lives, I’m in.”
In the Bubbles and Bowties tent, strings of lights crisscross above the partygoers and a small lounge area is rimmed with pictures of people who have cystic fibrosis, portraits from the book “Just Breathe: Cystic Fibrosis“ by photographer Ian Ross Pettigrew. Some of the people pictured in the book are no longer around, a jarring reality since the photographs were taken in 2014.
“There are some awesome CF patients that I’ve lost because that’s CF,” Schaller says. “It’s a wild disease. Losing friends has been not cool and it makes me work harder in my own life. What can I do to make sure this doesn’t happen to others? That feeds the mission.”
Her mission to raise money began in earnest in 2011, when Schaller debuted the Rock CF Rivers Half Marathon, a USATF-certified race on Grosse Ile, an island parked in the middle of the Detroit River. Schaller figured they’d get anywhere from 200 to 300 runners to join. On race morning, 1,400 racers toed the line. This year, the race’s fifth running, that number bloomed to 2,300 runners.
The mission to advance medical understanding continues through Schaller’s success story with Kalydeco, the little blue pill Schaller takes each day, which is the first to go beyond treating the symptoms of the disease to treat the underlying cause of gene mutation. It single-handedly took the function of Emily’s lungs from 70 to 88 percent. Schaller is also participating in a study that hopes to put hard numbers to a doctor’s prescription for exercise.
“I went to camp for cystic fibrosis back in the 80s and they gave you an option: chest therapy or run for 20 minutes,” says Schaller. “The greater scientific community put two and two together and found that exercise is good for us, but they haven’t answered how much.” The exercise study will figure out that prescription, an exact formula that will allow doctors to say, for example, 20 minutes twice a day on an elliptical will keep symptoms at bay.
More stories of how miles change runners coming soon.