“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.

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: 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.

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.

Eileen Minogue, Director of Operations for Patient Airlift Services (PALS), discusses arranging FREE air transportation for patients with in CF in need of medical diagnosis or treatment.

PALS is a nonprofit 501(3)c that is helping the CF community and “changing the world, one flight at a time …”

-    PALS offers three missions:

• Medical Missions help people with CF who need medical care but cannot afford air transportation.
• Compassion Missions assist family members traveling with individuals with CF. “This relieves a lot of stress,” according to Eileen.
• Humanitarian Missions where PALS assists with national disasters.

-    “PALS is not an air ambulance, and the pilots are not medically trained. We offer financial support through free flights for those people with CF in need,” Eileen explains.

-    Pilots associated with PALS volunteer their time, plane and fuel to help people with medical problems such as CF.

-    PALS flight requirements:

• Financial need must be verified with a social worker.
• Patient must be ambulatory and medically stable.
• If individual requires oxygen, it must be FAA approved. PALS does not provide oxygen.

-    PALS can fly to and from more than 5,000 airports.

-    PALS can cover flights in the entire Northeastern United States, and they are linked nationally through the Air Care Alliance Group.

-    Contact info:

• www.palservices.org
• 888-818-1231 or 516-300-1660

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

Eric Arthrell, 22 years old with cystic fibrosis, lives in Waterloo, Ontario, and talks about getting out there in the working world after college.

• Eric is working full-time, supporting himself financially, socializing, exercising ― he is running ING New York City Marathon for Team Boomer on November 7 ― and LIVING BREATHING SUCCEEDING through compliance.
• Eric was diagnosed at birth and had a normal childhood. “I just had to stay compliant, and I did a lot of exercise. I started ice skating and playing hockey at a very early age – everyone in Canada plays hockey.”
• Eric graduated from Wilfred Laurier University (Waterloo, Ontario) with a business degree.
• Eric enjoys participating in all sports, loves to travel (he recently made a trip to Africa) and also performs in a band.
• Regarding work: “I started working in the 10th grade and had a lot of various jobs, including sales in a sporting goods store, ground work at a golf course, and roadside construction.”
• Eric has never let CF be an issue when interviewing for a job or while working at a job. “I just keep work and CF separate, but it is important to get a job with a good health insurance plan,” Eric says.
• Eric currently works 40 to 50 hours a week in commercial banking and does a lot of analysis. He would like eventually to go into the social enterprise part of business and possibly be a college professor.
• Eric on the future of CF: “In 10 years, CF will not be looked at as a terminal illness; people with CF will live a long, full life and just have to deal with doing therapies.”
• “Family support has been the most important thing in my life that helps me get through the day when living with CF,” Eric says.
• Eric on the career world: “Go out there and add to society, set goals and accomplish them ― better the world!”

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

This year Team Boomer – Fighting Cystic Fibrosis will have over 120 runners competing in the ING New York City Marathon - ALL will be running and fundraising for a cause.

Eric Arthrell, 22 years old from Waterloo, Ontario Canada is running to raise awareness, fundraising for a cure, and to stay healthy.

• Eric was diagnosed at birth with cystic fibrosis and staying active has helped maintain his health.
• The ING New York City Marathon will be Eric’s first marathon.
• “Exercise is the key to staying healthy with cystic fibrosis,” states Eric.
• Eric’s goal for the marathon is 4 hours 30 minutes.
• What Eric is looking forward to the most about the ING New York City Marathon: “Crossing the finish line.”
• Eric’s fundraising page: http://www.firstgiving.com/ericarthrell
• Team Boomer: http://esiason.org/teamboomer

Bob Esparza is the loving father of a 10-year-old son, Tyler, who has cystic fibrosis. Bob and his wife, Susan, live in Texas, where Tyler goes to school and stays active. Bob and Susan have been married for 17 years and have three children.

• Bob and Susan found out Tyler had cystic fibrosis at age five due to many allergic reactions that were initially diagnosed as asthma. “Denial … was our initial reaction and the more research we did on CF, the more frightened we became,” Bob says. “For the first six months, we put Tyler in a bubble, but the doctors were great and helped us outgrow that mentality.”
• Bob and Susan don’t let anything hold Tyler back. They let him enjoy his life and run around with his friends because “he’s a kid and needs to have fun.”
• The thing that scared Bob the most about CF is that everything is “shortened … life is shortened, but I see people like you (Jerry Cahill) at 54, and you give us hope.”
• Bob and Susan get involved in the CF community by doing CFF Great Strides every year.
• “When times get tough, my wife and I lean on each other for support, as well as our family and church,” Bob says.
• Bob’s advice to other parents with a CF child: “Treat your son or daughter like normal, and let them be a kid and enjoy.”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 2nd in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Bryan Pendarvis is 21 years old and lives with cystic fibrosis. Bryan, who’s from Louisiana, is in his senior year at Southeastern University, where he is studying microbiology. Bryan is exercising, studying hard, in an intimate relationship, and LIVING-BREATHING-SUCCEEDING through compliance.

• Bryan was diagnosed prenatally, as his older brother also had CF.
• “Staying active and trying to live a normal life and do everything that any normal person does, including dating, is my focus,” says Bryan.
• He enjoys all sports, especially baseball, softball, jogging and weightlifting.
• Bryan started dating around age 13. Dating made Bryan take better care of himself, as he wanted to be “normal” and not show signs of weakness.
• “When dating I look for someone that is compassionate, communicates, and willing to understand. I did not ask for CF, I was born with it,” he says.
• On telling someone that you are dating about your disease: “First, I want her to get to know me for who I am and secondly for cystic fibrosis. When the time is right, I start with the basics and do not overwhelm them. I try to be subtle.”
• Bryan’s relationship with his mother and older brother, Shaun – who passed away from CF a little more than a year ago – have had a major impact on his life. “My mom is always there for me and helps me overcome obstacles. My brother Shaun taught me how to live with CF and how it should NOT hold you back.”
• Bryan on relationships: “Family is what matters and what is at heart …”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 1st in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.