Webcast and Live Q&A Thursday, August 27, 2009 at 8:00 p.m. EST

Transitioning from being a teenager to a young adult with CF means you will need to take responsibility for your own care. Dr. Marcia Katz, along with CF patient Casey Flaherty and her mother, will provide guidance and strategies to help you and your family manage the transition into adulthood successfully. The webcast will also explore important issues for CF teens and adults, including information on balancing life, work and school and establishing the best possible CF care routine.

Everyone is encouraged to submit questions live during the webcast or beforehand to get answers and advice from Dr. Katz and Casey Flaherty. This event provides valuable information for people with CF, their friends and family.

· Registration is required to watch this webcast.

· Upon registering you will also be invited to submit your questions, which will be answered live during the webcast.
Featuring:
Dr. Marcia Katz - Director, Adult CF center at Baylor Clinic in Houston, Texas; Associate Professor of Medicine, Baylor College of Medicine.
CF Patient Casey Flaherty shares her perspective on balancing friends, family and responsibilities.

Hey ya’ll,
If you get a chance please take some time to read the blog at http://www.brianandbobbyspeak.com/. This site features the email exchanges between two wonderfully awesome guys with CF. They open up about life, death, CF, love and everything in between. Unfortunately Bobby passed away Saturday. He had just emailed me about starting a film production company that featured CF patients. I would one day like to work with Brian and realize this dream for Bobby. Hopefully there will be funding some day and we can do this.

In the meantime we need to raise as much money as we can to fund the treatments that the CF Foundation is developing.

Rock CF,
Emily

The CFVoice.com website has a new look and I’m loving it, so please hop on over and check it out, stat! It’s updated with a lot of very cool and interactive media.  A feature that may come in handy is the Treatment Tracker. This is great for kids, teens and heck even us adults with CF to make sure they are keeping up and being compliant with all of their meds!

At the site kids can play around with Zude or in the Wacky Workshop, teens can listen to podcasts, adults can get advice about living life and loving life from very inspiring fellow CF adults and parents of CF patients can watch and listen as other parents open up about their CF journeys. I’m tellin’ you, CFVoice.com has got it going on people.

In the GO TO! section you can see a very special music video for my former band Hellen performing at the North American CF Conference as well as a special interview with my dear friend Bonnie and me at NACFC. Be sure to spend some time in the Adults section and catch the Rock CF feature as well as videos from all the other awesome people sharing their stories.

OH and be sure to design your own calendar there too. You can use your own pictures and add phrases for each month. CFVoice will print them and send them to you too.  AWESOME.

Finally stay tuned for the “Breathe Song Event”  which singers with CF come together to re-mix the beautifully moving song, “Breathe,” by England’s Matt Scales…this will feature my dear rock start diva and friend Rosie!

Apparently there is just too much to list here…SO GO TO www.CFVoice.com and check it out for yourself. Get lost, have fun and Rock CF while doing so.

Rock CF,

Emily

After much thought and research I put two and two together about what may have increased my risk of the achilles problem. When I was getting “tuned up” last month I was on an IV antiobiotic and a dose of oral Cirpo for three weeks. In the past I’d heard about Cipro causing weak tendons and in worst case scenario’s complete ruptures. Did I ever think this could affect me? No, I am healthy and strong so I thought I was in the clear. Well, I just finished up my last dose of Cipro about 5 days before we hit the road on the 335 mile trek. On that third day when I started having symptoms I never even brought the Cipro deal into the picture. On the way home though is when I remembered that I talked to a CF guy who had to have major surgery on his hand because of tendon ruptures due side affects of Cipro. Immediately I hop on Google and sure enough, there are many many cases stating that tendon’s can indeed weaken and rupture because of this antibiotic.

So take the affects of the Cipro, which I am on 6-9 weeks a year, and couple it with 75-100 miles a day of peddaling for four days I can see exactly what went wrong! Now I am majorly bummed though because Cipro is one med that is proven to fight the bugs in my lungs…but exercise has proven to increase my health to highest level ever. Catch 22? Yes. Maybe even catch 23? So my goal is to get into PT, get the inflamation down and get my strength back so I can get on my bike and also get back to running. My health cannot afford to miss this exercise. On the flip side my health can’t afford to lose one drug from the armory of meds that fight my bugs. Frustration has set in. My lungs are so ready for this ride, my endurance is the highest it’s ever been..so my achilles is holding me back; I think that’s lame.

A cross country ride is my dream and once my whole body is ready to rock I will get on this. In the mean time I have a cross country journey to plan!

Rock CF,

Em

Hey friends,

I just want to inform and update my supporters on what’s going on with me. The last couple of days of the ride to Chicago I started to have some problems with my achilles tendon. So bad that the last day I could barely pedal and putting shoes (other than bike shoes) and socks on was not an option. So I got the first doctors appointment I could Saturday am and was told what I did NOT want to hear. I cannot continue on by bike to California for the Emily to Ellen adventure. The key word here though is bike. The show will go on!

I’m a strong believer that things do indeed happen for a reason and after a brief chat with Dr. Wayne Dyer I am refilled with hope. After wiping some tears, a lot actually, my mind started racing and a Vespa scooter popped up. So now I am on the hunt for a Vespa to take cross country! I’m picturing my dog Bling Bling in a side car with goggles and a scarf and me rocking an awesome helmet (see below).

So, physical therapy on my achilles starts today and fits right in to my rest and ice routine. I am completely devastated about this but only see it as a minor hurdle in my life. My whole summer was riding (literally) on this cross country trek but I will be back on a bike soon and hopefully I can regain strength in my tendon and train to run the Detroit Free Press Half Marathon. My family has taught me to not stop dreaming and to keep fighting. Like the Free Press article says, I am known for “making lemonade when life serves up lemons.” Well I am picking some lemons off of a tree right now, any want some lemonade? It’s on me!

Here’s my dream machine: Vespa LXV 150..picture the E2E4CF logo on the sides of that baby.

Stay tuned for the latest plan of attack. I may turn my ride into a yoga tour stopping at all possible Lululemon stores on my way to Ellen.

No matter what, the show WILL go on and I will be in California one way or another!

Rock CF,

Emily

Read below or click my picture for the full story:

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

We made it!!!! Sure we may have added 50+ miles on from last year but we dropped a day. So we peddled 336 (give or take a couple miles) in 4 days. Give it up for City to City Team Rock CF 2009..a new title I just made up.

We got a great start in New Buffalo and cruised the first half of the last day. Good paths and great Lakeside roads. Once we got into the middle of Indiana though things got a little out of whack. I may have been cocky at noon by saying “oh we better call our welcome crew and have them come down early!” That came back to haunt me because we didn’t get into Grant Park until 7 central 8pm eastern time haha.

While we were off our fearless guide Pat’s route we did encounter some of the most amazing things ever. Carrying our bikes over the bigger train tracks on the planet, locals who have probably never seen a road map let alone know how to read one and we had a face to face meeting with a 7ft3inch woman! Check out our pic below:

We finally got ourselves straightened out and back on the paths we were searching for. We rolled into Grant Park to the best welcome ever!! Shawn and Aidan were there, our sagg man Jeremey, my friend Katie, Pat’s daughter Katie and two of the Chicago LULULEMON girls! After popping the tops on our champaign we threw down and did another gorilla yoga session led by Justina and photographed by Lisa.

All I can say is thank you to all of you who have donated to this ride and for the support. The emails and well wishes definitely kept us going. It seemed that every single time I stopped for something throughout the day, I would check my phone and a new donation or note would be there waiting for me. Incredible!!

I have to thank Kevin, Kevin, Marylou and Pat for making this the best City to City Ride yet. Also thanks Jeremy for jumping in for days 2-4, you were awesome!! The route was so smooth, quiet and beautiful…even with the slight hiccups and numerous climbing of the same hill..where is Bankers road again? Here’s to the 336′ish miles and to many many more..City to City 2010-Amsterdam to Paris??? Maybe!

Thanks to Pearl Izumi for the Jerseys too!

Peace, Love and Rock CF,

Emily

Ok I am typing this about an hour after my first ever massage..I must say I feel like I have had about 7 glasses of wine! The girl really worked me over good from head to toe, hitting all of those really sore spots from these 260 miles. Again, if that mileage doesn’t add up..blame it on the massage. The massage therapist did give compliment my hamstrings saying “they feel like bubble wrap..”. Wow..More yoga on the way to help with that.

Today’s ride was definitely the most beautiful riding day I have ever had! Rolling hills, blue sunny skies, shaded areas and only one attempted dog attack. We had a cool lunch in Dowagiac then hit the trail to my favorite little resort town New Buffalo.

We’re staying at a killer hotel right on the harbor that has a coffee shop that is really making up for the past few days. Don’t get me wrong the Bunn was great this am but I am ready for a nice cup!

Jeremy, Pat and I hit dinner together in town then we went to Oinkers for some ice cream. I opted for my personal favorite, chocolate yogurt in a cone with sprinkles.

Marylou hit the massage in the earlier slot so she had to bail on dinner with us. Shawn and Aidan came into New Buffalo for the annual meet up with us and went out with Kevin for the evening. What a great and relaxing night for all!

Umm I have to sign off now because honestly I can’t say I know what I am typing about. If you want a high without a hangover go and get a massage.

Rock CF,

Emily

A century. That’s how long we rode today, 100 miles!!! This tops yesterday as my longest ride. What a beautiful day to ride too..not too hot or windy. Some rolling hills through Hillsdale but that wasn’t unexpected given the name. Right now I need to thank Pat for allowing me to draft behind him a lot today. Not only does he tell the best stories but this guy is a machine…watch the crop dusting though buddy.

Many things happened today on our 100 mile journey. I learned about cylos, learned how to identify farm animals scents, had 3 attempted dog chasings (thank GOD that pitbull fell into the ditch!), we rode through Verne “mini-me” Troyers’s hometown and last but not least we passed through Michigan’s fastest moving city, Colon. What timing too. Right at the city limits sign was a porto potty in a field and my thought is that it must be a city ordinance to place one there right at the tip of Colon. A sign next to Colon City Limits read “This is a Purified Water Community”..awesome.

The very very best thing that happened today was a surprise visit from my brother Adam and my niece Kacey!! Adam had a day off and drove over with Kacey from Grand Rapids to meet us for lunch. Kacey was so happy to see me..I mean I was SOOO happy to see my little pumpkin butt. She is the best and I had her on my mind as we powered up those hills.

We’re going to miss Kevin W. the rest of the ride. His awesome wife had to deal with some medical issues but we are all hoping for a quick recovery Robun! Kevin I promise you a 100 mile ride when I get back.

Stay tuned for day 3 into New Buffalo!

Rock CF,

Emily

First off I have to say I LOVE Lululemon! My good friends from the Somerset store were down at Campus Martius at 6:30am all ready to bust some pre ride gorilla yoga. Now I just did yoga Sunday for the first time with them so I’m still new to this but I was ready for dose #2. Why not? Especially right before we headed west on our bikes for 4 days! Katie who’s a great teacher led the group and got Marylou and I really focused, stretched and ready for the ride. I need to thank (can’t thank enough) Maisie and Katie, Katie, Lori and Kristen. What a crew of really caring people who I must say gave us the best send off to date. Thanks girls! See you at yoga on Sunday..I’m going to perfect that hand stand thing on this trip, just you wait.

Above pic: I’m showing off my sweet skills..one day soon I will be able to touch those toes..one day. I must also point out here Reba/Becca who is on the far end down there. This is my home slice #1 who just 5 hours before this was at the Lewis Black show with me a few blocks from here. Such commitment and true friendship to show up for such early yoga and send off party..thanks Reebs!

So, yes, we rode 84 miles today. We left Campus Martius and headed downriver via Fort street and Jefferson. We were greated by Dr. Mech’s staff at his vet clinic who cheered us in..even a few puppies cheered too! We refueled and kept on riding. We stopped for lunch at about 1:15 in IDA and already had 52 miles in.Sweeet.

We kept riding, and riding…INTO THE WIND but eventually ended up in Petersburg where Kevin W and I pounded a Swizzle, which is a local version of the Blizzard. Darn good and much earned. My dad magically appeared at the ice cream corner and we sent him ahead for a hotel. So here is sit on a comfortable bed, clean and showered, in the air condition and ready for dinner! The longest ride of my career so far and I am feeling the best I have felt after a long ride. Rock on baaaaby!

Oh…let me introduce the riders. Me-Emily 27 pw/cf and owner of this site. Kevin B. Age-? Good friend and back for City to City #3. Kevin W. aka Rebel Age-? My former gym teacher. Returns for City to City #2. Marylou- age? Good friend & and former h.s. counselor returns for City to City #2. Dr. Pat Mech aka Radar–Age, nobody really knows..family vet, comedian, musician, best storyteller. Deb (my mom) and Diane-Sag vehicle for day 1. Jeremey Mackinder-bass player for Whitey Morgan and the 78’s. Sag for days 2-4. Lowell- support.

Alright there you have it. The cast list for the 3rd annual City to City Ride!

Stay tuned for more pics and day 2 updates!

Rock CF!

Em