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.

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: http://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.

Living, Breathing, and Succeeding for 100 podcasts!

We salute Jerry Cahill, an inspiration to many inside and outside the cystic fibrosis community!

Jerry started the CF Podcast in 2005.  Since then, they've grown in popularity and given a voice to people with CF.  More importantly, they've given hope to thousands who struggle with cystic fibrosis on a daily basis.  If you've missed a podcast, you can catch all of them online at www.jerrycahill.com.

Living.  Breathing.  Succeeding.  Congratulations, Jerry Cahill.

For more information on cystic fibrosis, Jerry Cahill, or the Boomer Esiason Foundation, be sure to visit our website, www.esiason.org.

Karen Vega, 30 years old with cystic fibrosis, discusses her pregnancy with CF and the joy of having twin boys.
Karen and her husband, Alex, have two-year-old twin boys, Jayden and Logan. In this podcast, Karen describes the medical concerns she faced and the treatments she undertook for her successful pregnancy.

Karen is LIVING, BREATHING and SUCCEEDING with a beautiful family!

A little more than a decade ago, marriage and starting a family seemed to be an unthinkable dream for people with CF. Through advancements in treatment of the disease and being compliant, the dream became a reality for Karen and her husband.

•    Karen grew up in New York, was diagnosed with CF at eight months and also has a brother with CF.
•    Karen attended Fordham University, worked on Wall Street for six years, and now is a stay-at-home mom.
•    “My doctor was very supportive and recommended my FEV’s be above 70 percent before deciding to start a family,” Karen says.
•    “One medical concern with a CF pregnancy is that sometimes people develop diabetes (CFRD),” she explains.
•    Karen saw a high-risk OB, and she also saw the doctors every two months instead of three months.
•    “You must establish a routine to balance family and health, and it’s important to have a good support team,” Karen says. “My mom moved in to assist me after I gave birth to Jayden and Logan.”
•    “The biggest challenge I face being a mom is time management,” Karen says. “I started jogging, and the exercise has been a major factor in keeping me healthy and a good way to get out with my two beautiful boys in the stroller.”

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