ROCK CF

Photo Credit:Carlos Osorio/AP
DETROIT (AP) — There are days 26-year-old Emily Schaller can barely breathe because of cystic fibrosis - and playing in smoke-filled bars hasn’t helped.

By day, Schaller is an employee at a retail store. By night, she’s the drummer of Hellen, a Detroit-based rock band that hosts concerts to support CF research.

She was a whirlwind of activity recently as she sped up stairs, down stairs, from the front to the back of the Royal Oak Music Theatre putting the finishing touches on her annual “Just Let Me Breathe” concert fundraiser.

“It doesn’t seem like this should be happening today,” she said.

Through Hellen and her organization, the Rock CF Foundation, Schaller has generated thousands of dollars for the Cystic Fibrosis Foundation.

Cystic fibrosis is a genetic chronic disease that affects the lungs and digestive system. It stems from a defective gene that causes the body to produce thick, sticky mucus that clogs the lungs, obstructs the pancreas and stops natural enzymes from helping the body absorb food. About 70,000 people have it worldwide, the Cystic Fibrosis Foundation says.

Every morning, an air-filled vest shakes Schaller’s lungs to loosen mucus. She lives in the hospital anywhere from two to eight weeks each year - fighting off bacteria that could kill her. But she doesn’t focus on the fact that life expectancy for people with CF is 37 years.

“Just in the past few years I thought I wanted to do something I love, which is fundraising,” Schaller said.

She feels for her peers who can’t go out for fear of getting sick.

“That makes me not feel really good because I’m playing in a bar two nights a week. But you gotta weigh it,” Schaller said. “Is it sitting at home and watching a movie, which you don’t really want to do, or is it going after my passion which is drumming in a smoky bar?”

Schaller has no plans of slowing down anytime soon.

“She takes her medical needs in stride,” said Dr. Joan Germana, the pediatric director of a cystic fibrosis care center at a New York hospital. “She dedicates herself to life.”

Schaller worked with the Cystic Fibrosis Foundation on a Web site video advocating healthy lifestyles for CF patients. She participated in a medical trial for VX-770, a drug designed to help restore the balance of salt and water by acting directly on a malfunctioning protein.

Schaller’s goals don’t allow her to play victim to the lethal genetic disease.

“I’ve got two older brothers that don’t have CF, and my parents have always treated me like I don’t have CF,” she said. “It made me realize that yeah I do have CF, I do have a genetic disorder, but it’s not gonna stop me from doing anything.”

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On the Net:

The Rock CF Foundation: http://www.letsrockcf.org/

© 2008 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Make sure you get your copy of the newly release Detroit Rocks CF Volume 2 CD. Volume 1 Sold Out so make sure you pick up the newest album that features 16 Detroit bands rocking to help cure cystic fibrosis! To purchase ($15 Each) check out cdbaby.com (should be available 4/28/08) or send a check to:
Rock CF Foundation
2995 Bridge St.
Trenton,MI 48183
You can purchase under the DONATIONS page, just make sure you note that it is for the CD.

Here’s the line up of Detroit’s Finest:
South Normal- Breathe
The Muggs- Gonna Need Your Help
The Hard Lessons- See and Be Scene
Hellen- Take Me Away
Alex Winston- Missunderestimate Me
Whitey Morgan- Another Round
Hotness- Keep on Keepin On
Novada- These White Lies…
Dutch Pink- Juliette
Ghost City- Hey Wendy
The Displays- It’s Time
Grande Nationals- Us Against Them
Stolen Liberty- Sweeter with the Tendency
The Highlife- Sacrements
Beggars- Gold
***Bonus Track F*U*C*F–Featuring Emily and Nathan Mack on Vocals, Jason Schaller on Guitar, Emily on Drums and Gregg Leonard on Bass**

I am really going to rock Cystic Fibrosis on June 1 when I will run my first 1/2 marathon. (That’s 13.1 miles for you non runners out there). As you know the Rock CF Foundation and I are big advocates of exercise for both CF patients and the general public. Now I’ve done a few 5k and 10k’s but I really want to challenge myself this time. Tuesday night I completed an 8 miler and felt really great after it.
Since the ole’ gall bladder removal April 2 I was told to “ease” back into running three weeks after surgery. Well I talked my doc into letting run after two weeks and thought who’s definition of “ease” should I use? I used mine!
The 1/2 that I’m running is the Dexter-Ann Arbor which I hear is a great course. In September I am running the Chicago 1/2 and then the Detroit 1/2 in October!
I’ll be raising money for the Rock CF Foundation during all of these races. If you are interested in donating you can do so at the DONATIONS link on the left.

Also the tentative dates for the Detroit to Chicago “City to City Ride 08″ are August 2-6. There will be 4-5 of us riding. The first leg from Detroit to Saline may be open to the general public. Please stay tuned to see if you may want to peddle with us!

Rock CF,
Emily

Good day,
As you know today is Earth Day! The Rock CF Foundation wants to share some easy ways to go green to help our one and only Earth. We here at Rock CF take the environment very seriously and would like a little help from all you Rock CF supporters!

Here are 10 of Emily’s favrotie tips that you can do everyday to help the environment:

1) Stop using those plastic shopping bags! Instead opt for reusable bags that are often sold in your grocery stores like, Kroger, Meijer and even Target. (leave 1 or 2 in your car so there is no excuse to use plastic). If you must use those plastic bags please reuse them or recycle them.

2) Those plastic water bottles are killer. It takes 1.5 million barrels of oil to produce America’s demand for plastic water bottles! Try my favorite the SIGG bottle which is a Swiss made aluminum bottle that will last forever and was voted the #1 water bottle! I love mysigg.com.

3) Walk or ride your bike around town. Why drive to someplace that’s a few blocks away? Keep your car parked and hit the streets. You’ll get to enjoy the fresh air and save the money in pockets!

4) My favorite one: Skip gift wrapping! Use newspapers to wrap or reuse ribbon or gift bags. I gave up on wrapping and even giving cards. For my brothers wedding I wrote him a check. My name and address were on there, they know it’s from me haha!

5) When at the ATM or bank teller skip the receipt! It’s a waste of paper and most likely will be thrown away soon after.

6) Try working Organic foods into your household. This will not only benefit what you put into your body BUT by choosing organic less pesticides and chemicals are put into the environment.

7) Recylce!! If your community like mine doesn’t offer pick up, you can still collect plastic, paper, aluminum and glass and take it to a recycling center. It’s easy and you feel good while doing it.

8) This is the easiest; replace at least one of you light bulbs with a compact fluorescent bulb. You will save $9+ a year while saving carbon emissions by 100+ pounds a year!

9) Unplug your cell phone charger, TV, power strips and other electronics when they’re not in use. 10% of your electric bill is made up of items that are OFF but still plugged in.

10) Set your thermostat a degree higher for air conditioning and a degree lower for heat. This could save $100 per year on your utility bills and if home in America did this we could save enough to provide a year’s worth of gasoline, electricity and natural gas to every person in Iowa.

* Some facts take from “the green book-the Everyday Guide to Saving the Planet One Simple Step At A Time” by Elizabeth Rogers and Thomas M. Kostigen with a foreword by Cameron Diaz and William McDonough*

The Rock CF Foundation isn’t telling you what to do but we are offering suggestions that can help better where and how we live. Keep checking www.letsrockcf.org to purchase the Organic and Eco Friends Rock CF tee shirts and other merchandise.

Have a good day and Rock CF!
Emily

Hello my friends,
Happy almost spring! For the umpteenth year I will be participating in the Cystic Fibrosis Foundation’s Great Strides walks. There are various walks around Metro Detroit (and other parts of the country!), I am walking at the Downtown Detroit River Walk on Friday May 9th at 4 pm and then again with “Em’s Freaks” in Sterling Heights May 10th at 10 am. The Detroit walk is a brand new walk and we are excited to bring a walk to our fare city.

To find out more about GREAT STRIDES Visit www.cff.org/greatstrides. While you are there you can sign up to walk with Em’s Freaks, start you own team or to find other walk sites. This is the biggest national fundraiser put on by the Cystic Fibrosis Foundation and the Rock CF Foundation and I are proud to be a part of this. If you cannot walk but you want to help, you make a contribution to my team and the Cystic Fibrosis Foundation at http://www.cff.org/Great_Strides/FundRaisingSummary/?0=0

Please email me emily@letsrockcf.org with any questions about the walks.

I participated in this study earlier this year and although I think I was on the placebo this is the most exciting news I have heard in a very long time. Once this hits the market, my life will be changed for the better!! Thanks to you all for continuing the fight against CF. YOU are making a difference.
Below is taken from the CF Foundation.
The Cystic Fibrosis Foundation and Vertex Pharmaceuticals announced recently that VX-770, an oral drug in development that targets a basic defect in CF, showed promising results in an ongoing Phase 2a clinical trial for patients who carry the G551D mutation of CF. The drug is being developed by Vertex Pharmaceuticals Incorporated.

Patients who took the drug for 14 days showed significant improvements in several key indicators of cystic fibrosis, including lung function, nasal potential difference measurements and sweat chloride levels. The findings suggest that VX-770 improves function of what is known as the faulty CFTR protein. This early data is promising and could have important implications for studies of other drugs in development.

This is the first time that any potential therapy has improved the abnormal sweat chloride (salt) levels in a person with CF. Excessive sweat chloride is a key clinical indicator of cystic fibrosis. The “sweat test” is the traditional diagnostic test for CF.

“These early results are an extraordinary endorsement of our hypothesis—that small molecules can correct the basic defect and affect the clinical indicators of cystic fibrosis,” said Robert J. Beall, Ph.D., president and CEO of the Foundation. “The emerging data for VX-770 represents the most exciting results we’ve seen from a Phase 2 trial and increase our confidence that we’re on the right track.”

Check out BusinessWeek and the Boston Globe for features about the CF Foundations Investment in CF research.

You can help pass the Cystic Fibrosis Awareness Resolution by asking your elected officials to sign-on. Click the link below to urge Congress to help spread awareness for cystic fibrosis: http://capwiz.com/cff/issues/alert/?alertid=11220821&type=CO

The newest Heroes of Hope recipient is Joseph Edge! At 12 years old, Joseph is already an accomplished, stellar student, athlete and star in his own community through raising awareness about CF and his volunteer work.
www.heroesofhope.gene.com