Colleen Caul was born into a big Irish family in St. Louis, Mo. Growing up, Colleen was always active, but her whole life changed in 2004, when her uncle started to coach her little sister, Katie Rose, how to run. Katie Rose has cystic fibrosis. Elated to see the positive effect that running was having on her sister’s health, and inspired by their dedication, Colleen started to run.

In the past five years, Colleen has completed four marathons and recently completed the “Run for Roses,” a 65-day running pilgrimage to spread awareness, raise funds and share stories about cystic fibrosis.

Colleen founded the Run for Roses Foundation (www.runforroses.com) to support her efforts to raise funds toward a cure for CF.

-    In honor of her sister, Katie Rose, Colleen ran from St. Louis to New York City from July to September 2011. She ran 1,000 miles in 65 days for one dream: to cure cystic fibrosis.
-    Colleen ran 15.5 miles each day, and her stretching routine was about three hours a day. She ate Starburst candy for energy during her runs and refueled with chocolate milk.
-    During the 65-day run, Colleen blogged with friends and fans. In Ohio, she had the opportunity to run with a family that has two children with CF. “It was amazing, they both ran four miles with me,” Colleen says.
-    “People with CF never have a day off … when things got tough during a run, I just thought of that and said I can do it!” she says.
-     “Crossing the finish line in New York City was incredible,” Colleen says. “Katie, family and friends joined in for the last five miles – it was an out-of-body experience that I will never forget.”
-    The overall message Colleen wants Run for Roses to communicate is HOPE & POSITIVITY.


This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Josh Mogren: Moving Forward After Losing a Sister to CF

Josh Mogren is a 32-year-old with cystic fibrosis and cerebral palsy. Josh, who lives in St. Paul, Minn., discusses overcoming all obstacles with CF, including the loss of his sister, Angela, to CF. Josh has been happily married to Carly for five years, and also enjoys the company of their two dogs and the puppet, “Moganko.”  Josh has a blog (www.welcometojoshland.com), is a movie buff, enjoys singing karaoke, and is LIVING BREATHING & LOVING LIFE. 

• Josh was diagnosed with CF at birth; his older sister, Angela, also had CF.
• Josh has fond memories of his Angela: “Angie was strong-willed, very funny and a real prankster. My sister taught me to be a strong advocate for myself, and that is very important when you have an illness like CF,” Josh says.
• “Growing up, Angie was a lot sicker than I was, and that was very frustrating for her. I felt terrible about it ‘cause I was doing so much better – it was not fair,” he says.
• Josh believes it’s ok to be sad but that people with CF have to keep fighting and be HAPPY! 
• “Having fun and making light of things is the key to being happy. That is why I created my blog and YouTube site (“Welcome to Joshland”). I share a lot of my thoughts and stories about my life, CF, and otherwise,” Josh says. 
• Josh appreciates things a lot more since the loss of Angie, and he feels blessed to have a great family and friends.

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

“The Power of Two” - A Story of Twin Sisters, Two Cultures and Two New Chances at Life

Marc Smolowitz, making his directorial debut, speaks about “The Power of Two” documentary film.

 “The Power of Two” offers an intimate portrayal of the bond between half–Japanese twin sisters, Anabel Stenzel and Isabel Stenzel Byrnes, their battle with the fatal genetic disease cystic fibrosis and the miraculous survival through double-lung transplants. 

• “Reading their book sealed the deal to make the film. Ana and Isa are great writers,” Marc says.
• Marc enjoys heath care storytelling that lends itself to bigger and more personal issues. “Seeing what patients go through with a chronic illness is very powerful,” Marc says.
• “Most people take breathing for granted, but it is amazing what people with CF go through just to breathe… I tried to focus a lot on breathing throughout the film,” he says.
• Marc’s trip to Japan with Ana and Isa was amazing. “Ana and Isa are cultural ambassadors.”
• “The Power of Two” engages the multiple communities: cystic fibrosis; transplant; and medical and health care. “Engage with us…”
• For more information on the film: www.thepoweroftwomovie.com.

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Jerry Cahill has been an inspiration to the CF community for many years.  His message of living, breathing, and succeeding has touched the lives of many people living with cystic fibrosis.

Recently, we tagged along with him on the way to Milwaukee, where he spoke to packed house at Children's Hospital of Wisconsin.  Jerry's message was clear - everyone with CF should be exercising and getting involved in the CF community.  Jerry talks about his lifelong struggle with CF and his no-nonsense approach to managing CF on a daily basis.

To learn more about Jerry Cahill, the Boomer Esiason Foundation, and cystic fibrosis, be sure to visit our website at www.esiason.org. Share your thoughts and stories with Jerry by e-mailing him at jcahill@esiason.org.

Jennifer Champy was diagnosed with cystic fibrosis and Addison’s disease at the age of 28. At 38, the CF diagnosis was reversed.

In 2004, Jennifer graduated from nursing school at the top of her class and worked full-time as an emergency room nurse. Now 39, she lives in South Carolina and is "working disabled." She still has Addison's disease — a chronic endocrine disorder — and through the ups and downs, she is living, breathing and succeeding!

Twenty-five-year-old Jessica Link, who lives with CF, knows the importance of having your medical information organized and of advocating for yourself.

Jessica was born and raised in North Carolina and graduated with honors from the University of North Carolina with a degree in political science and psychology. She now works from home as a trader as well as part-time for a clothing retailer.

Jessica likes to keep up with American politics, bury her head in a good book, experiment in the kitchen, and shop.  Jessica is living - breathing - succeeding with CF every day!

    •    Jessica is an only child and was diagnosed at birth via meconium illeus.

    •    “Being organized with all your medical information makes you very independent, pro-active, and a collaborative patient, rather than reactive-passive,” Jessica says.

    •    Jessica stays organized with her health by using a “cheat sheet,” health notebook, Google Docs or a flash drive, pill strips, a hospital kit and a checklist.

    •    “It’s important to stay organized because it’s YOUR body and YOUR health, not your doctor’s. Being organized will minimize medical mistakes,” she emphasizes.

    •    Jessica blogs about life with CF (and other things…) at: breathsentence.blogpot.com

    •    Jennifer’s advice to others with CF: “Be compliant and get organized!”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Megan Mollahan is a parent and caregiver to her 2 children with cystic fibrosis. Her daughter Maureen is currently 20 years old (diagnosed at age 8) and her son Jack currently 10 years old (diagnosed at 2 months of age) are currently living in New York.

Megan will discuss what it’s like to wear “many different hats” as parent, caregiver, friend, advocate, and on and on…

    •    When her daughter was initially diagnosed Megan leaned on her faith, family, friends, and doctors for support.

    •    Megan’s initial focus for her children with CF was “being diligent to treatments to keep them healthy and keeping a positive attitude”.

    •    “I try to stay pro-active in the CF community with CF Walks, school projects (working on SKYPE for her son to do with teachers when he is sick at home), and fundraising support from local businesses”, states Megan.

    •    “Everything I do for my children with CF is times two… so I try and simplify and make them independent with all treatments and medications. This becomes a juggling act at times but well worth the effort”, states Megan.

    •    Megan’s advice to other parents/caregivers: “be patient, open a dialog and communicate, have a support team, and it’s ok to take a day off…”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Valerie Batz, a 52-year-old with cystic fibrosis (CF), received a double lung transplant 13 year ago. In this podcast, she discusses life “pre and post” her transplant.

Valerie has been happily married for 24 years and is the proud mom of healthy twins who are now 22 years old.  Valerie studied in Paris, majoring in international business, She speaks three languages and has worked for an international computer company. Val’s passion is cooking, especially Italian food, and her dream vacation is to return to Paris for her 25th wedding anniversary.

Valerie is living, breathing and succeeding in Illinois with her beautiful family, and although she still has CF, she breathes easier with her new lungs.

-    Valerie was diagnosed with CF at 22 months old. “I’m grateful to my parents who raised me with high expectations, and treated me like a normal child,” she says.
-    Pre-transplant, Valerie was always sick, everything was an effort, and due to lack of oxygen, she always was tired. “Life pre-transplant was overwhelming, as my FEV’s were less than 20 percent,” Valerie explains.
-    Growing up, Valerie was active in swimming, cheerleading and skiing. Post-transplant, she stays active by biking.
-     “Transplant is not a cure … you trade one disease for the other, but this disease is better, I can breathe,” she says.
-    “Life post-transplant initially is a little bumpy, but you will get through it and it is worth it,” Valerie says.
-    Valerie’s advice: “Don’t touch your face, eyes, nose … that is how we all pick up germs and get sick.”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Kay Wharton Massow, 49 years old with cystic fibrosis (CF), discusses “living life to the fullest as an adult with CF.”

Kay has been married for 22 years and is the proud mom of a 19-year-old daughter, Ashley.  After a successful career in the advertising industry, Kay now does freelance creative direction and graphic design work. She also enjoys jogging and weightlifting to keep her lungs clear.

Kay is living, breathing and succeeding in Illinois with her beautiful family.

•    Kay was diagnosed with CF at age 21, after she attended Purdue University.
•    “I am very happy that I was diagnosed later on in life and that CF was not a major factor in my life as a child – I just led a normal life,” Kay says.
•    Kay considers herself a bit of a “health nut” and is very involved in nutrition, exercise, the “joy factor” (being happy), and being compliant to her medication routine.
•    “I believe in the ‘three eights’ … eight hours of sleep every night, eight hours of exercise every week, and eight hours of the joy factor (fun) every week,” Kay says.
•    “My daughter inspires me to push on in life despite having CF,” she notes.
•    Kay believes in a good quality of life that includes a combination of physical exercise, a positive attitude, and getting out and socializing.

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Dottie Lessard is a 44-year-old with cystic fibrosis (CF). She also is 16 years post- double-lung transplant, an athlete and life coach, a published author (“Seven Letters That Saved My Life”), and founder of Dottie’s Dream, a nonprofit organization. Most importantly, Dottie is the proud mother of her seven-year-old son, Liam. Dottie is LIVING BREATHING SUCCEEDING with a beautiful family!
With the help of today’s therapies, people with cystic fibrosis are now living longer and achieving more than ever before.

•    Dottie grew up in Massachusetts and was diagnosed at six weeks of age.

•    “I always admired athletes and the strength and endurance that they possess, and therefore exercise has become a passion of mine,” Dottie says.

•    Dottie started playing basketball at an early age, but as she got sicker, she always found a way to exercise - even if it was only five minutes every day. “Exercise empowers me,” she says.

•    “I was listed for a double lung transplant in 1992 and stayed motivated by thinking of all the great things I would do post transplant – that kept me going.”

•    “Pre-transplant, I was in the hospital a lot and watched life happen outside … I became friends with the nurses and learned about their lives,” Dottie says.

•    Post-transplant, Dottie continued to focus on being an athlete and started competing in the Transplant Games in 1996.  Dottie currently trains 45 to 60 minutes every day.

•    “I continue to be motivated today because of my wonderful son, Liam. I am thankful that I have been blessed with a new life with my lung transplant,” she says.

•    Dottie’s words of wisdom for people with CF…
- Believe!
- Find a balance.
- Stay positive.

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
For more information about cystic fibrosis or the Boomer Esiason Foundation, be sure to visit our website at www.esiason.org.