ROCK CF

June 24, 2008

We are gearing up for the 2nd annual City to City ride from Detroit to Chicago from August 2 - August 6! There will be four of us making the awesome trek this year; me, Kevin B. (who rode with me last year!), Marylou (friend and old H.S. counselor) and Kevin “Coach” Wilson. We are all super excited about this and know it will be just as great as last years 282 mile venture on US-12/Michigan Avenue.

Marylou and I went for a nice 31 mile ride this weekend and it was great, until we were both chased in opposite directions and almost devoured by the same German Shepherd. YIKES!! There will be much more riding to come this month and we will keep you posted on any other newsworthy stories.

The group ride is in the works right now and will be happening on August 2 at 9 am. The course will be a 20-25 mile loop from Downtown Detroit/Campus Martius to Dearborn via Michigan Ave. Cost will be $25 per rider and any rider that raises $50 or more will receive a FREE organic City to City tee shirt!! Online registration will be available at Active.com. Riders can also register by 8:30 am August 2 at Campus Martius.
CitytoCityRide.org will be up and running soon with all of the details!!
* Helmets are mandatory*

Rock CF,
Emily

At 46, Richard Weiss is determined to take the best possible care of himself while living a full and happy life. His positive attitude serves as an inspiration to other people with CF. Based on most recent CF data, the average life expectancy for someone with CF is 37 years old.

Richard and his family have a special place in the CF community since Richard unknowingly coined the nickname “65 Roses” for cystic fibrosis when he was 4 years old. Richard’s mother volunteered to work with the Cystic Fibrosis Foundation soliciting donations when she discovered that all her sons were diagnosed with CF. One day, unbeknownst to her, her young son Richard overheard one of her phone calls and he told his mother that he knew she was working for “65 Roses.” The phrase caught on and now children with CF sometimes refer to their disease as “65 Roses” because it is easier to pronounce. Richard’s nickname for CF inspired the symbol of a rose that now represents the Cystic Fibrosis Foundation.

Richard knows that one of the keys to being healthy with CF is staying compliant to his medical routine. He enjoys going to the gym and knows that his medical routine is incredibly important to staying well. Richard describes adherence to his medical regimen as “staying to the cause.”

Richard can truly speak to the idea of maintaining balance with cystic fibrosis. In addition to spending time with his family and working at a volunteer canine rescue organization, Richard participates in numerous volunteer activities in the CF community, such as serving as a speaker at fundraiser events. With his commitment to his health, positive attitude and perseverance, Richard inspires everyone around him.

Heroes of Hope Living with CF recognizes individuals with cystic fibrosis (CF) who live full and productive lives while managing their healthcare needs. To date, Heroes of Hope has honored nearly 45 outstanding individuals with CF in more than 30 states. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities.

Learn more about Richard
Click here to access Richard’s personal Heroes of Hope
Web page. www.heroesofhope.com

June 2, 2008

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Well I made it!! The goal was to finish the 1/2 in two hours and we finished four minutes over, I’m am completely ok with that! The Dexter to Ann-Arbor course was a monster. It took me about 5 miles to really get into it, get my breathing right and get in synch. The whole race was beautiful and the other runners were great. They would run up to Kevin and I and ask what our Rock CF shirts were about. This gave us a chance to spread the word about CF and what we are doing to Rock it!

On the course I ran into an old respiratory therapist from Children’s and an old friend from high school. I was greeted at the finish by my mom, dad, brother Jason, brother Adam’s wife Marcy, Steph, Marcy’s friend, Kevin’s wife and another racer friend.
I am definitely sore today. Those hills were killer and it took some pushing to get up them so I thought of all my CF friends when I was running up the last hill at mile 12.

Bring on the next race baby and Rock CF!
XO,
Em

May 29, 2008

Well I just returned from my last short run before this Sunday’s Dexter to Ann Arbor half marathon. Never ever would I have thought that I would be able to or even want to run 13.1 miles, and now it’s a reality. I guess by not sitting on the couch all day, eating bad food and not being active, I am putting up my best fight against cystic fibrosis. Right now I am not letting CF control my life. Sure I have to go in the hospital for tune ups, spend a lot of time on breathing treatments and therapies and my lung function tops out right now around 59%, but I have CF in the palm of my hand. I am living life and loving it too!!

So the next three days I am going to take it easy, eat good nutritious food and rest up for the big race. I’ve stayed out of smoky bars for months and though it stinks to deny invitations by friends to go out to these places I just can’t afford to put myself in these situations.

I hope everyone has a great weekend and be sure to check back Sunday night to see how I did!!
Rock CF,
Em

A determined and talented teenager, Chase, age 17, doesn’t let CF stand in the way of pursuing his goals. In addition to the demands of Chase’s full schedule that includes part-time job at a restaurant and schoolwork, he juggles an intense medical regimen of inhaled medications and antibiotics that requires hours of his time each day. He also participates in golf, weight lifting and baseball to help keep his lungs strong.

Not only does Chase eat to stay healthy and strong, which is essential for someone with CF, but food is also a passion for him. Chase apprentices under an award-winning chef at an exclusive restaurant in Baltimore , Maryland .

When Chase isn’t busy with school, cooking and sports, he gives back to the CF community. For the past two years, Chase has volunteered at the Maryland fundraiser called Country Concert, an event founded by the Cystic Fibrosis Foundation over 20 years ago.

By participating in activities he loves and staying positive, Chase has learned to live with the challenges of cystic fibrosis, and by now, it is just another part of his life that he takes in stride.

Heroes of Hope Living with CF recognizes individuals with cystic fibrosis (CF) who live full and productive lives while managing their healthcare needs. To date, Heroes of Hope has honored nearly 40 outstanding individuals with CF in more than 30 states. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities.
Learn more about Chase
Click here to access Chase’s personal Heroes of Hope
Web page. www.heroesofhope.com

May 20, 2008
Do you want to look as sweet as my brother Jason in this cool Rock CF shirt?

I promise that you can! In just a short while the Rock CF online store will be up and running and you will be able to buy your very own shirt to show your support for CF. We are working to rock out a few new shirts for ya and as soon as they are all set the store will open!

In the meantime you can pick up your copy of Detroit Rocks CF Volume 2 at http://cdbaby.com/cd/detroitrocks2

Sunday May 18, 2008

Well I am back from my monster of a run this morning. I woke up at 6 am did my treatments and drove to meet my running partner for the last long Sunday run. Today it was 12.5 miles and that’s only 0.6 miles less than the half marathon. FYI I am running my very first half marathon on June 1, the Dexter to Ann Arbor half. I can’t express how excited I am for this. This is a huge deal for me and my goal is to get in under 2 hours. After todays run I think I can do it!!!

A little about my training partner Mr. Wilson/Coach. Coach was my elementary and middle school gym teacher. Since I was a little tomboy and good at sports (gym was my best class!) we grew an instant bond. He was also the Grosse Ile HS varsity football coach and when I was in 6th grade asked me to be the manager and be on the field with the players. This was huge! A middle schooler on the field with the varsity team? Sweet. So throughout middle school and high school I was the manager and didn’t miss a practice or a game. All we cared about was when football season started. He was my biggest cheerleader and visited me in the hospital when I was getting tuned up. They even retired the #1 jersey for me when I graduated. Coach was always a bigger guy but just 5 or so years ago when he stopped coaching he started running a lot and training a lot and he looks great!!!

I started running about two years ago doing 5 and 10K’s but I decided this year that I was going to push myself and do a half marathon. Running has brought my pulmonary function (PFT’s) to the highest they’ve been in the last few years. Even if my function gets down I push myself to keep rockin! Mr. Wison heard that I was going to do a half from my mom/fellow teacher and said he would train me and pace me in the race. So last three Sundays week he ran the long runs with me (10, 12.5 & 12.5). This is so cool to me, seriously! He is also going to ride in our bike ride from Detroit to Chicago in August too.

So here I am 2 weeks away from the big race. He is 1 week away from his full marathon. (He’ll run the 1/2 with me as a “cool down”..that’s crazy!) I’m feeling good and can’t wait to cross that finish line. Since April 16 I have run about 140 miles..something I never would have dreamed of.

I will post about race day on June 1 after I eat a ton of good food! If you are going to be in Ann Arbor on June 1 come on down and cheer on the runners and help spread the Rock CF word. A couple new Rock CF slogans came to me today after the run.. For the music lovers “rockin’ CF every riff of the way” and for the runner in me on June 1 “rockin’ CF every step of the way!”
Be well and Rock CF,
Emily

P.S. I forgot! If you would like to sponsor me for this run you can make a donation right here at the DONATIONS page on the left.

May is a great month, Congress has officially named MAY CF Awareness month. Yay!!
So this month maybe you can do one of more of these things:
* Send out a mass email sending people to this site to show them what CF is and what we’re doing to help in the fight.
* Participate in the national Great Strides walks happening in your area (www.cff.org/greatstrides for more info).
* Buy Detroit Rocks CF Volume 2–play it loud and if someone asks about it tell them about CF!
* Wear your Rock CF shirts with pride everyday this month..you can wash them if you’d like…I might.
* Tell someone with CF that you love them!!

Rock CF.
LOVE,
Em

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.”

—

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.