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Grosse Pointe Resident Creates National Foundation for Cystic Fibrosis

The day she was diagnosed with cystic fibrosis, doctors told Grosse Pointe resident Emily Schaller she would likely not live long enough to graduate high school.

 

In 2000, Emily Schaller did something doctors never thought possible. She graduated from Grosse Ile High School.

As a child, Schaller was diagnosed with cystic fibrosis: an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States, according to the Cystic Fibrosis Foundation website.

In 2007, Schaller founded Rock CF in Trenton, which is a web-based music and fitness driven foundation that raises money and awareness for cystic fibrosis.

"I've always been kind of a face for the disease across southeast Michigan, especially Grosse Ile, and now nationwide, but Grosse Ile has been a huge supporter," Schaller said.

Schaller, who now lives in Grosse Pointe, began raising funds for cystic fibrosis at a very early age with the help of her parents. Founding Rock CF was just the next step in the process.

She is a firm believer that the money she's helped raise has contributed to the study and treatment of cystic fibrosis, which has increased the life expectancy of those diagnosed with the disease by 20 years over the past 20 years, according to Schaller.

"When I was diagnosed they told my parents that I wouldn't live to graduate from high school," Schaller said. "Now life expectancy in CF (cystic fibrosis) patients is 38 or almost 40, and now we are looking at new treatments to allow us to be grandparents and great-grandparents."

Rock CF was recently selected as the Michigan Association of Student Councils' Charity of the Year. Schaller hopes students at pubic schools across Michigan will to raise up to $40,000 for Rock CF during the 2012-13 school year.

Schaller plans to return to Grosse Ile next year as the race director for Out Run CF, which is the 3rd annual Rivers Half Marathon, Half Relay and 5K Run and Walk on Sunday, March 24.

People from 18 states participated in last year's race and it raised over $50,000 for Rock CF.

"That's huge for us," Schaller said. "We're a small non-profit."

Schaller's non-profit also raises money to support research initiatives.

Schaller has been participating in a clinical trial for a new drug that can stop cystic fibrosis from manifesting. She said her lung function was around 60 percent and her health was declining before taking the drug. Now, she said she's noticed a dramatic difference.

"I've never felt better in my life," Schaller said.

With Rock CF, Schaller's reach grows farther each day.

"It's easy to sit and do nothing," Schaller said. "And that's what a lot of people do."  

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