ROCK CF

Rocking to find a cure for Cystic Fibrosis
City to City Ride
Just Let Me Breathe
Emily to Ellen Ride
Rock CF
CFvoice.com
Press and Media

Emily is Riding Her Bike to Ellen!!!

July1

You heard it right folks! Starting the fist week of August I will be riding my bicycle from Detroit, MI to Burbank, CA!

Continuing west from the 3rd Annual City to City Ride from Detroit to Chicago was a decision I made to show just how much I want to be on the Ellen Show but most importantly I will have the opportunity for an incredible ride and numerous opportunities to spread awareness and raise funds for the Cystic Fibrosis Foundation. So I’ll be heading west… Waaaaay west, about 2,500 miles.

Right now I am looking for 100 people to donate $25 to make this ride possible. If you want to be one of the core donors please click the pic below then click the DONATE button on the bottom of the page. We’re 90 people away right now!

If you want to make a direct donation to the CF Foundation you can do so by clicking the image below:

You’ll be able to follow my ride at www.E2E4CF.com! Video updates, blogs and a map will be featured on that site.

More updates for my ride accross America and the City to City Ride will be posted soon and often. My hope is to be able to connect with CF families and friends across America. Once my route we can figure out who is where!

Rock CF,

Emily

Travis Flores is a new Hero of Hope

June30

Travis Flores, a multi-talented 18 year old, doesn’t characterize himself by his chronic disease, cystic fibrosis (CF). His many accomplishments, including publishing a book called The Spider Who Never Gave Up at only eight years old, inspire all those around him.

Besides writing prose, Travis also excels at writing music, poetry and acting. The consistent thread through his art is a positive message, encouraging other people to overcome challenges in their own life. In the fall, Travis will continue to pursue his art by moving to New York City to attend Marymount Manhattan College, entering both the acting and writing programs.

Despite his busy schedule, Travis finds the time to run his non-profit organization, The Travis Flores Children’s Foundation, which grants patients the use of computers during the duration of their hospital stay. Travis is also a spokesperson for Battle Against Cystic Fibrosis, through which he delivers motivational speeches to hundreds of schools around the country about his own experiences.

In order to stay as healthy and strong as possible, Travis knows he must treat his cystic fibrosis by staying on track with medical appointments, medications, nutrition, exercise and numerous other requirements. No matter how busy he is, Travis keeps his health a priority so he can continue to accomplish the goals in his life.

He says, “I try to express to them that I know how hard it is, how hard it can be. But you have to stay positive. Live life to the fullest because everything happens for a reason. Never give up.”

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 over 50 outstanding individuals with CF around the United States. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities. To learn more about Travis and to listen to his podcast, click here.

Heroes of HopeLearn more about Travis
Visit http://www.heroesofhope.com to access Travis’s personal

Heroes of Hope Web page.

Patient Voices: Cystic Fibrosis

June11

Hey ya’ll!

What do a Bill, a Margarete, an Eric, a Paloma and two blonde Emily’s have in common? Well I’ll tell ya. We all have cystic fibrosis or love someone deeply with CF and we are featured in a multimedia story called Patient Voices featured on The New York Times website. Oh and one of those blondes just happens to be me! Everyone with CF has a voice but here are six of us telling our stories. Speaking of voices, two different customers on two separate occasions at work yesterday looooved my voice..one said “I like your voice, it’s interesting and very different!” Another liked my “accent” and asked where I got that. I told him Detroit baby, Detroit. What they don’t know is that I pay money for this voice. A lot of money… thanks TOBI!

June 10, 2009

Patient Voices: Cystic Fibrosis

Less than 20 years ago the median life span for people with cystic fibrosis was 29. Today, with new treatments and earlier diagnosis, those with the inherited disorder are living longer, more fulfilling lives. But with complicated, time-consuming treatments and frequent lung infections, life with cystic fibrosis can be difficult. Six men and women speak about their experiences.

Enjoy and Rock CF!

Emily

Participate!

June5

The world of cystic fibrosis is in the midst of the most exciting times right now. The CF Foundation has a pipeline of new drugs and treatments that are being developed and some are in human trials. These treatments will be life altering and extending for patients living with cystic fibrosis today and tomorrow. In order to get these drugs to market to all the 30,000 patients in the U.S., we need CF patients to participate in trials!

I recently finished a trial that I was enrolled in for 84 days. When this drug makes it to market all I can say is you’ll all be happy! So I am asking and inviting all of my CF friends out there to consider at least looking to see which trial that may qualify for and then move forward if it looks like something you can make happen. We can’t do this without your help! Let’s Rock CF Together.

Here is a link to the Cystic Fibrosis Foundation page that will help you find a trial that may be right for you:

Emily’s CF Minute!

June4

Hi everybody!

I am now going to be working with my dear friends at www.cysticfibrosis.com as the sites Spokesperson!

New as of June 1 is the “CF Minute” which features daily videos of yours truly doing anything from learning new dance moves, riding my bike, getting my port flushed to who knows what! Jump on over to the site now to check out what’s happening right now. Be sure to become a member too and check back Monday through Friday to see what I am up to now.

The CF Minute page also has my live Twitter so keep up to date with that and Tweet me!

Rock CF,

Emily

P.S. Stay tuned for the announcement of a lifetime!!!!

Creating a Road Map for Early CF Care

June2

Webcast and Live Q&A Thursday, June 25, 2009 at 8:00 p.m. EST



As a parent or caregiver, it can be tough to maneuver through the challenges of CF when you first learn of the diagnosis.

Dr. Susanna McColley will discuss best practices in CF care, including disease progression, care goals and medication. Kelly Weber, mother of Jake Weber will be on hand with Dr. McColley to share their stories and advice. This webcast features valuable information for people with CF, their friends and family members.

· 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.

Dr. Susanna McColley - Director, CF Center at Children’s Memorial Hospital in Chicago, IL; Associate Professor of Pediatrics at Northwestern University’s Feinberg School of Medicine.

Kelly Weber shares her perspective about caring for a child with CF.

Important Safety Information

Pulmozyme should not be used in patients who are allergic to any of its ingredients. Pulmozyme should be used in conjunction with standard therapies for CF. When starting Pulmozyme therapy, patients may experience change in or loss of voice, discomfort in the throat, chest pain, red watery eyes, rash, dizziness, fever, or runny nose. These side effects are usually mild and short-lived.

Please see Important Safety Information and accompanying full Prescribing Information.

Please see the Privacy Policy for more information.

This webcast is presented by Genentech, the manufacturer of Pulmozyme.

Emily Runs on New York Times Website

May28

Runners Tell Their Stories

People who train for marathons and other road races all have their own stories to tell. As New York Times writer Dana Jennings wrote this week, training for a marathon is a way to reclaim his body from cancer. Some runners pound the pavement to test their mental and physical endurance or to raise money for charity. Others do it for the camaraderie of race day.

Today, as part of our ongoing Run Well marathon training coverage, we’re launching a new series called Running Voices, created by Web producer Karen Barrow, who also creates our regular Patient Voices series. In pictures, audio and printed word, Running Voices captures the voices of runners and the reasons they do what they do.

Today you’ll meet Theresa Riley, 63, of La Crescent, Minn., who didn’t start running until the age of 39 after she was inspired by marathon great Joan Benoit. Today, Ms. Riley has completed 138 marathons. “It can be done if you really want to do it,” she says. “You have to have the desire.”

And there’s Rabbi Peretz Chein, 33, of Waltham, Mass., who ran his first marathon two years ago to show his students the importance of breaking out of your comfort zone. After 10 minutes on a treadmill, he says he was close to hyperventilating. “Accomplishing something you never thought possible is extraordinary,” he says. “I feel like I was on cloud 37.”

Emily Schaller, 27, of Trenton, Mich., has cystic fibrosis, and after running a 10K her lung function had improved. She ran her first half marathon last June, and now she’s training for the Detroit marathon in October. “My lungs have never felt so great,” she says. “With every step, I’m beating CF. That’s what keeps me going.”

And finally, meet Grace Lim, 44, a mother of two in Oshkosh, Wis., who wanted to get the most out of her marathon experience, so she sought corporate sponsorship for her slow, back-of-the-pack run during the New York City Marathon. She landed several sponsors, including the active wear company Horny Toad, and during the race, she stopped for coffee, a beer and photos with firefighters. (She was dissuaded from eating a shish kebab since running with a stick can be dangerous.) Although she normally runs marathons in under five hours, she ran this one in over six. “I overperformed,” she said. “I high-fived people. I handed out stickers. And I gained two pounds.”

To immerse yourself in Running Voices, click here. And check back regularly for new Running Voices in the weeks and months to come as part of the Run Well marathon series.

(Click pic to go to multimedia page. Once there click my face to hear my story)

Become a member of Cysticfibrosis.com now!

May15

Please take a few minutes to head over to www.cysticfibrosis.com and become a member! Cysticfibrosis.com is an incredible way to reach out and connect with the CF Community. Members are always there to be an ear for you and since we have experienced almost everything (in the CF world and out) members will always provide quality pointers, tips and advice to your problems or questions. CF patients always have a lot to say so even if you just want to talk you can join in the nightly 8pm chats!

With almost 10,000 worldwide members this site makes a huge impact on the day to day lives of patients with cystic fibrosis and also their family and friends. So if you have CF, have a family member or friend with CF or you just want to be on the ins with the CF community join today!

Rock CF,

Emily

Dan is this month’s Hero of Hope

May13

Despite calling himself an “ordinary guy with an extraordinary illness,” Dan Lagasse has never let his CF force him into leading an ordinary life.  The average lifespan of someone with CF is 37-years-old, but Dan, through faith, determination and adherence to his medical routine, has been blessed to reach the age of 50.

Dan has made a positive impact on a global level, traveling to more than 43 countries, including Iraq, Thailand and China, in his 20 years of missionary work. Dan’s desire to help other people is enduring, and he is now a pastor who counsels over 50 missionary families around the world, as well as other patients and families who struggle with CF.

In order to continue to travel and work with people, Dan knows that he has to stay compliant to his medication and take the utmost care of himself. He organizes his medications meticulously so that he can stay on top of each of his four daily doses of numerous prescriptions and vitamins. He also works out at the gym three times a week and stays active by hiking and doing house and yard work.

Dan believes that “no one can walk this journey alone,” and credits his family as a tremendous source of strength. Married for 25 years, Dan describes his wife DeAnna as, not only the love of his life, but also a rock of strength for him.  His two adopted daughters, Jessica, 18, and Shirena, 19, add joy and laughter to his heart and home.

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 over 50 outstanding individuals with CF around the United States.  Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities. To learn more about Dan and to listen to his podcast, click here.

Learn more about Dan
Visit
http://www.heroesofhope.com to access Dan’s personal

Heroes of Hope Web page.

Crain’s Detroit

May13

Last Thursday I was recognized at the Crain’s Detroit Business 20 in their 20’s celebration at Steve’s Soul Food in Detroit. It was a great night for local business men and women and the Detroit community as a whole.

The evening included cocktails, a brief recognition ceremony followed by more drinks and some soul food. I did try to get the dance party started by nobody followed suit. Maybe the 80’s in their 80’s party will be different.

I would like to thanks Mary Kramer and everyone else from Crain’s. Also congratulations to the other nineteen 20’s. Keep on rockin.’

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