Check out the newest Hero of Hope who is a fellow runner! Go ahead girl!!!

Alysoune Coleman

Alysoune Coleman is an active, outgoing 13-year-old from Arizona who enjoys the outdoors and loves athletics. Despite living with the chronic illness cystic fibrosis (CF), Alysoune approaches life with a positive attitude and a smile. Dr. Joan DeCelie-Germana, director of the Cystic Fibrosis Center at Schneider Children’s Hospital in New Hyde Park, New York recently had the opportunity to chat with Alysoune and learn more about this inspirational Hero.

I know you are a really active junior-high student. What are some of the things you like to do?

I am in my third year of running track, and I love it! I run with a track club called the AZ Flames and recently achieved my personal best time in the 800 meter event. I also like to play soccer and tennis and enjoy playing the piano.

How do you balance your busy schedule while still maintaining your health?

Staying on top of my medications is definitely a priority, and I get up early every morning to do my breathing treatments before school. With all my activities, I was having some trouble keeping my weight up. So my doctor had a G-tube put in and that has helped me a lot. I also have diabetes, so I make sure to keep an eye on my blood sugar, especially during sports when it tends to fluctuate.

What motivates you when things get a little tough?

I just tell myself that if do my best every day, that is all that I can do. My attitude can help change how I see the tough stuff in life.

You have such a great attitude! How do you stay so positive?

My family has taught me that nothing comes quickly and easily in life, and anything worth wanting is worth working for. Everyone in my family is so positive in this way that it makes me want to give 100 percent all of the time. And on the rare occasion that I do feel a bit down, my parents will do something silly to make me smile. How can I be sad with a house of fun, crazy people trying to make me laugh?

What would you tell other people your age with CF?

Everyone should be involved in something they enjoy! Just because you have CF doesn’t mean that you have to sit at home and be closed off. I love playing sports and they give me a goal to work toward, which has helped me understand my health maintenance routine in the bigger picture.

Please check out past Heroes and also Nominate your own CF Hero here!

Rock CF,

Em

August 2009

Astra Waller, 18, recently graduated from high school and, like many of her peers, is looking forward to starting college. Unlike most of her peers, however, Astra has the genetic disease cystic fibrosis (CF) that requires her to maintain a strict medical routine, often taking several hours a day. Astra has inspired many with her positive attitude and dedication to both dance and to her health. Read more about Astra and listen to her podcast by clicking her picture above!

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.

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

Heroes of Hope Web page.

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

Lauren Beyenhof, 28, recognizes that cystic fibrosis (CF) has profoundly shaped the choices she has made in life, but it has never defined who she is as an individual.  Diagnosed at birth, Lauren’s positive outlook on CF and all the subsequent challenges she faces, make her an inspiration to everyone around her.

As a professional writing freelancer, Lauren has used her love of writing to reach out to others in the CF community.  She has two CF related blogs: Breathing Deeply and Blogging About CF.  She has also been interviewed by ABC.com for an article about cross-infection in CF patients and had an article featured on Adoption.com about CF newborn screening.

Lauren is committed to maintaining a strict medical routine in order to stay healthy.  She does airway clearance, nebulizer treatment and takes enzymes and multivitamins with every meal.  She also works out with a personal trainer three days a week to improve her lung function, doing cardio machines and lifting weights to improve her upper body strength and to build muscle.

Lauren lives each day by the motto: “You never know how much you can face until you turn around and see that it’s now behind you.”  She attributes her strength and ability to overcome the “humps” in her life to her strong faith in God, the support of her loving husband, Brad, and to her family.

Heroes of HopeT 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 50 outstanding individuals with CF in over 35 states.  Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities. To learn more about Lauren and to listen to her podcast, click here.

Learn more about Lauren

Click here to access Lauren’s personal Heroes of Hope Web page. www.heroesofhope.com

Robyn is a gifted 17-year-old student and musician who focuses on keeping herself healthy by managing her chronic disease cystic fibrosis, while still pursuing the activities she loves. Diagnosed with CF since birth, Robyn has learned to work around the limitations of the disease with lots of determination and the help of her family and CF care team.

Robyn has always been a fighter. For 15 years, Robyn endured tube feedings, which are a way of providing nutritional support with a nutrient dense liquid delivered through a tube directly into the stomach. Robyn accomplished a major personal victory when she was able to eat enough food orally to be able to remove her gastronomy feed tube, which happened in January of this year!

In addition to the time-consuming CF regimen that she undertakes daily, Robyn stays very busy with school, music and community service. She began playing the violin in first grade and continues to play in her high school’s orchestra. Robyn is also heavily involved in community service, working on diverse programs, including “Nothing But Nets,” an organization to help prevent the spread of malaria, and volunteering at her local battered woman’s shelter. Next fall, Robyn plans on attending the University of California, Davis where she will major in nutritional science.

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 more than 48 inspiring individuals with CF in over 35 states. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities.

Learn more about Robyn

Click here to access Robyn’s personal Heroes of Hope Web page. www.heroesofhope.com

Risa Pine does not let the challenges of cystic fibrosis (CF) stop her from helping others around the world, even at the age of 49. As someone who has a disease in which the average lifespan is 37-years-old, Risa knows that she is fortunate, and also knows that she must stay committed to her taking care of herself in order to stay as healthy as possible . Risa enjoys pilates, yoga, meditation, free weights, working out on her elliptical machine and long walks. Each day, she must take a variety of transplant medications and vitamins.

“Taking care of my CF always comes first. I know that this will enable me to do all the things I want to do in life and will help me to live longer,” said Risa. “My state of mind affects the health of my body, so I need to create a positive environment in my life so I can continue to enjoy all the things I’m passionate about.”

Risa wants to remind others with CF that there is always hope. Risa is an inspiration to those in the CF community through her eternal optimism and determination to make every day count.

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 48 inspiring individuals with CF in over 35 states. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities.

Learn more about Risa

Click here to access Risa’s personal Heroes of Hope Web page. www.heroesofhope.com

Stacy Motenko has spent 17 years working hard to raise money and support for research for cystic fibrosis, showing that she is not only living with her disease but fighting it everyday.

At only 21, Stacy has already made headway in achieving many of her goals. In addition to graduating from the University of California at Santa Barbara with a degree in communications and a minor in applied psychology, she now works at the San Diego Chapter of the Cystic Fibrosis Foundation (CFF), where she is a Special Events Coordinator, helping to plan and execute their annual fundraising events.

“Having CF has given me a different perspective on life. It’s made me closer to my family because we’ve been through so much together, and it’s also given me a greater appreciation for the little things in life and made me try not take anything for granted,” said Stacy.

As committed as Stacy is to helping others in her professional career, she also is committed to helping herself stay as healthy as possible.  Each day she focuses on making positive choices and being strong, subscribing to her favorite quote “you must BE the change you wish to see in the world.”

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 more than 47 inspiring individuals with CF in over 35 states. Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities.

Learn more about Stacy

Click here to access Stacy’s personal Heroes of Hope Web page. www.heroesofhope.com