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Photo Courtesy of the Cystic Fibrosis Foundation. Photographer Alison Krayer

BY KRISTEN JORDAN SHAMUS • FREE PRESS COLUMNIST • August 9, 2009

Every day, Emily Schaller takes at least 40 pills.

Every day, she spends a few hours in therapy that includes wearing a special vest that shakes free some of the mucus clogging her lungs.

Every day, she exercises so her body will be strong.

And every day, she does whatever she can to help researchers find a cure.

When Emily Schaller was born, her parents didn’t know what was causing the recurrent ear infections and colds in their blond-haired, blue-eyed bundle.

It wasn’t until she was 18 months old that they learned a genetic disorder was at the root of her troubles.

Emily has cystic fibrosis. At the time, doctors said she might not live long enough to graduate from Grosse Ile High School. Her parents had never known they each were carriers for the disease that affects about 30,000 Americans.

When Emily was born, the average person with cystic fibrosis lived to be 16 or 17 years old. Through medical advances, most now live to celebrate their 37th birthdays.

Emily’s goal is to keep pushing the life expectancy back, so she lives to see that day when CF stands not for cystic fibrosis, but, as she says, for “cure found.”

Now 27, she is in a very public battle with the disease.

So far, Emily has raised $150,000 for the Cystic Fibrosis Foundation, which she credits with helping her live as long as she has. She has taken part in several clinical trials for new therapies and is in many ways a poster child for making lemonade when life serves up lemons.

“I don’t get down about CF,” said Emily, who lives in Trenton. “It’s what I have. It’s what I do.”

What she’s doing now is pretty incredible.

Last week, she and four friends rode their bikes from Campus Martius Park in Detroit to Chicago to raise money and awareness for the cause. It’s the third year for her City-to-City bike ride.

Later this month, she plans to take it up a notch, pedaling from Chicago to Denver and then finding other unconventional ways to get to Los Angeles as part of a publicity stunt to win a spot on “The Ellen DeGeneres Show.”

DeGeneres, she says, is her favorite famous person.

“Ever since her show came on, I’ve been totally into it,” said Emily, who resembles DeGeneres. “She’s hilarious, and she reaches such a huge, broad audience. It’d be great to get the word out about CF on her show.

“She always says if you want something to happen, it’ll happen, you just have to believe. I just know it’s going to happen.”

She’s planning to leave Aug. 23.

“My doctor doesn’t want me going through the desert on a bike, so we think Denver is the ending point for the bike ride,” she said. From there, Emily said, she’d probably raft down the Colorado River to the Grand Canyon and then ride a donkey.

“Anything we can do that’s crazy, we’ll do it,” she said.

Emily and her friends put up a video on YouTube urging the show’s producers to consider having her as a guest. Check it out by going to YouTube.com and searching for “Help Emily get on Ellen.” The Cystic Fibrosis Foundation also has a Web page set up so people can donate in honor of Emily and support her efforts to get on the “Ellen” show at http://e2e4cf.com/.

But that’s not all. Emily has her own Web site, www.letsrockcf.org, where she sells T-shirts for cystic fibrosis research and promotes upcoming fund-raisers. Her band has played at several benefit concerts (Emily’s the drummer). And just last week, she drew the most votes in a national Real Burgers for Real Heroes contest through Applebee’s restaurants, winning the top prize out of 8,500 entries.

When Emily gets back from Los Angeles, she will start a new clinical trial on a drug that can potentially treat the causes of cystic fibrosis.

“It’s huge. It’s not a cure, but it’s the closest thing to a cure,” she said.

What an inspiration.

Go, Emily, go.

Contact Features Editor KRISTEN JORDAN SHAMUS: 313-222-5997 or kshamus@freepress.com