54 Years Old and Living-Breathing Succeeding With Cystic Fibrosis
Episode #0086 Travis Flores – Giving Back to the CF Community

Travis Flores, 18 years old with cystic fibrosis, grew up in Ohio and is attending college in New York City. Besides going to school, Travis has written a children’s book, has two websites that are raising awareness and funds for cystic fibrosis and is a "Heroes of Hope" award recipient. Travis is living, breathing and succeeding with CF.

  • Travis started advocating for cystic fibrosis at a very young age and “embraces cystic fibrosis.”
  • The Spider Who Never Gave Up is a children’s book that Travis wrote when he was eight. (www.sparkeythespider.com)
  • Travis also created a non-profit organization that helps get computers for children and adolescent patients in the hospital so they can communicate friends (www.tfcf.org)
  • Travis enjoys being active in the community, writing music, people watching and taking long walks.
  • “Living with CF, it is important to find a balance with being compliant and your social life, as well as having a great support team,” Travis says.
  • Travis’ goals include: graduate college, succeed in career, and raise awareness for cystic fibrosis.
  • Travis’ recommendation to everyone: “Embrace life!”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 8th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

 

Direct download: travis-flores-int.m4v
Category:podcasts -- posted at: 4:45pm EDT

Episode #0085 Casey Flaherty – Nutrition and CF

Casey Flaherty, 25 years old with cystic fibrosis, lives in New York City and is training for the ING New York City Marathon. Casey also is working, attending nursing school, taking yoga classes and living, breathing and succeeding with CF.

  • Casey eats a high-calorie, well-rounded diet consisting of fruits, nuts, vegetables, dairy for calcium, and lots of carbohydrates and protein.
  • “Besides being adherent to my treatments, I believe in good nutrition, exercise and rest. I try to get eight hours of sleep every night,” Casey says.
  • Casey loves junk foods like baked goods and pizza, but she tries to stay away from foods high in corn syrup and processed goodies.
  • “I am always eating throughout the day, so I make sure I pack my bag with fruit and trail mix,” she says.
  • Casey’s little secret on nutrition and CF is that she eats a lot of peanut butter and cheese as snacks because of their nutritional value.
  • “CF is part of my life, and I just deal with it. Everyone has something,” Casey says.
  • Casey’s recommendations to others with CF: “Be adherent to your medications, eat a well-balanced diet, rest and communicate with your doctor."
  • Casey believes “the more you put into your health, the more you will get out of it!”


This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 7th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

 

Direct download: Flaherty3.m4v
Category:podcasts -- posted at: 6:37pm EDT

Episode #0084: Remembering Brian - A Wonderful Husband and Loving Father - Windows Version

In this riveting video interview, Brian Gerofsky's wife and two sons share his story only months after he succumbed to CF in May 2009 at the age of 57.

  • Debbie was married to Brian for 26 years and has two wonderful sons -- Evin (22 years old) and Alex (19 years old).
  • “Brian was funny, loving, smart, passionate ... and to know him was to love him," Debbie says. Brian always called Debbie his soulmate, and his song for her was Van Morrison’s "Brown Eyed Girl.”
  • Brian was very private, independent and compliant with his CF care, as he did not want to burden his family. “We lived our life around Brian’s CF but did not let it stop us from LIVING!” Debbie says.
  • The Gerofsky family did a lot together, enjoying the beach, museums, music, dance and Broadway shows. The family meant everything to Brian. He believed in hard work and LIVING YOUR LIFE!
  • Debbie, Evin and Alex believe the most important thing in a family dealing with CF is “open communication and respecting each other's feelings.”
  • Evin and Alex admired their dad’s strength and the fact that he was always there for them. “If my dad was here right now I would like to tell him THANK YOU and I love you very much,” they said.


This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 6th in a series of 12 made possible through an unrestricted educational grant from Genentech to he Boomer Esiason Foundation.

 

Direct download: Gerofsky.wmv
Category:Vidcast -- posted at: 8:49pm EDT

Episode #0084: Remembering Brian - A Wonderful Husband and Loving Father

In this riveting video interview, Brian Gerofsky's wife and two sons share his story only months after he succumbed to CF in May 2009 at the age of 57.

  • Debbie was married to Brian for 26 years and has two wonderful sons -- Evin (22 years old) and Alex (19 years old).
  • “Brian was funny, loving, smart, passionate ... and to know him was to love him," Debbie says. Brian always called Debbie his soulmate, and his song for her was Van Morrison’s "Brown Eyed Girl.”
  • Brian was very private, independent and compliant with his CF care, as he did not want to burden his family. “We lived our life around Brian’s CF but did not let it stop us from LIVING!” Debbie says.
  • The Gerofsky family did a lot together, enjoying the beach, museums, music, dance and Broadway shows. The family meant everything to Brian. He believed in hard work and LIVING YOUR LIFE!
  • Debbie, Evin and Alex believe the most important thing in a family dealing with CF is “open communication and respecting each other's feelings.”
  • Evin and Alex admired their dad’s strength and the fact that he was always there for them. “If my dad was here right now I would like to tell him THANK YOU and I love you very much,” they said.


This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 6th in a series of 12 made possible through an unrestricted educational grant from Genentech to he Boomer Esiason Foundation.

 

Direct download: GerofskyWEBFILE.m4v
Category:Vidcast -- posted at: 3:28pm EDT

Episode #0083 Kevin McCrea – Exercise for Clear Lungs

Kevin McCrea, 18 years old with cystic fibrosis, lives in Washington and loves life. Kevin attends Washington State University, is involved in many sports and enjoys spending time with family and friends.  He believes in “shaking up the lungs and clearing them out” through vigorous sports.

  • Kevin was diagnosed with CF at age two and grew up in a small town in the Northwest. Living in the country, Kevin enjoys swimming, hiking, fishing and riding dirt bikes.
  • “In high school, I was actively involved in team sports, including track and field [four years], basketball [two years] and football [one year]. Sports was a social event and has made a major impact on my health,” Kevin says.
  • Kevin’s training in basketball and track and field was two hours a day, six days a week, and the running and jumping made him cough and clear out his lungs.
  • Kevin on being compliant: “I believe in staying compliant and doing all my treatments, including exercise, so I can stay healthy and live a long life."
  • The biggest challenge Kevin faces with CF is time management of all the treatments.
  • “CF is not a big deal to me ... I was born with it, live with it, and it will not stop me," he says.
  • Kevin’s advice to other teens with CF: “Push forward an never give up – be active and go for it!”
  • “Step it up! Get out there and live and do not alienate yourself."


This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 5th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

 

Direct download: KevinMcCrea.mp3
Category:podcasts -- posted at: 7:05pm EDT

Episode #0082 Philip Stevanovic – CF Related Diabetes (CFRD)

Philip Stevanovic is 36 years old with cystic fibrosis and diabetes. He lives in New York, is married with twin boys, works full-time as a construction manager, and received a double lung transplant in August 2007 at New York Presbyterian/Columbia University Medical Center in New York City.

  • Philip was diagnosed at age two at the University of Minnesota.
  • “Growing up with CF was pretty uneventful, except that I slept in a mist tent. I played soccer, tennis, football and lived in Africa, the Middle East and Yugoslavia,” Phil says.
  • Philip was diagnosed with CFRD in 2006 via glucose tolerance test.  “I kept getting repeat infections because I had high blood sugar, and bacteria feeds on sugar."
  • “I treat my CFRD with insulin shots before I eat, and that controls the sugar at meals. Blood sugars are controlled by food, medication and exercise."
  • “Since I started insulin treatment for my CFRD, I have gained weight, which is something I could never do with CF,” Phil says.
  • Philip sees an endocrinologist for his CFRD.
  • “My role models are my mother and father – they are responsible for making me the person I am today, and I thank them for everything.”
  • Philip’s recommendation to others with CFRD: “Enjoy life, be happy, stay focused and get an endocrinologist familiar with CF.”


This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 4th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Direct download: PhilStevanovich.MP3
Category:podcasts -- posted at: 3:09pm EDT

Episode #0081 Patrick Newman – Gearing Up for College with CF

Patrick Newman, 18 years old with cystic fibrosis, lives in Missouri. Patrick is playing sports, enjoying friends and family, and gearing up for college.  Patrick will attend the University of Missouri in the fall and is looking forward to being independent and taking responsibility for his health care.

  • Patrick works hard at staying healthy with all his treatments to manage his CF. “I know that those few tiny moments I spend doing my treatments could add years onto my life," he says.
  • “I grew up in a healthy environment, active in soccer, baseball and golf. I also learned, at an early age, to take responsibility for myself," he says.
  • Patrick is looking forward to going away to college to experience higher education, socializing and being “my own boss."
  • “I am very lucky to have my family and friends as a great support system, and I will be rooming with my best friend at college – it’s all about partnership," Patrick says.
  • The biggest challenge Patrick faces with CF is time management.
  • Patrick will be majoring in biology, wants to attend medical school, and hopes to study abroad for one semester.
  • Patrick on being compliant: “You do not want to play catch-up with your therapies, so just do it. I do it because I want to live and enjoy life!”
  • Patrick’s advice to others with CF thinking about college: “Step it up! Get out there and live and do not alienate yourself."


This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 3rd in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Direct download: PatrickRamsey.mp3
Category:podcasts -- posted at: 5:13pm EDT

Episode #0080 Victor Roggli – Succeeding in the Career World with CF

Victor Roggli is 58 years old with cystic fibrosis. Victor lives in North Carolina, is married with a family, and works full-time in the medical research field. Victor, a professor of pathology, focusing on lungs, spends his workday teaching, doing research and consulting. Victor is LIVING, BREATHING and SUCCEEDING with CF in the career world and in life!

  • Victor was born in Winchester, Tenn., on a farm. He was diagnosed at 12 years of age.
  • “Growing up, I was always very active, playing touch football, softball and basketball. I am very thankful to my parents for letting me play sports and be a real boy," Victor says.
  • Victor attended Rice University, where he majored in biochemistry. He then attended medical school at Baylor in Houston.
  • “If I had a chance to do something differently when I was growing up with CF, I would have been more open about my CF and not put up so many walls," Victor says.
  • Victor now believes in being open about his CF and does his aerosol therapies at work. “With the American With Disabilities Act, people cannot discriminate.”
  • “Know your limitations with CF and be realistic in what you do in the career world," Victor advises.
  • Victor loves singing in the shower and has become a BIG fan of karaoke at least twice a week.
  • Victor’s advice to others with CF: “Do not adapt to CF, let it adapt to you.”

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

Direct download: VictorRoggli.MP3
Category:podcasts -- posted at: 4:52pm EDT

Episode #0079 Chad Brown Believes in Laps for Life with Cystic Fibrosis- iPhone Version

Chad Brown is 27 years old with cystic fibrosis and lives in Seattle, Wash. Chad took his FEV1’s from 29% to 58% through the power of swimming. He previously was listed for a double lung transplant, and now he is getting his college degree, working to support himself, and exercising for life! Chad moved from Memphis to Seattle a few years ago and with a new CF team and new therapy and exercise discipline, he is LIVING, BREATHING and SUCCEEDING on a daily basis.

  • Chad was born in Tennessee and was diagnosed at birth.
  • “Growing up I was always treated very differently and in many ways babied. This temporarily helped me cope with the disease, but eventually it took a negative toll on me," Chad says.
  • Insurance issues forced Chad to move to the state of Washington. “Washington has a user friendly state insurance program for people with cystic fibrosis."
  • “For me, along with my therapies, swimming has kept me alive and healthy. When I first started swimming, I could barely swim a lap. I now swim 45 minutes ... 5 days a week!”
  • Chad is pursuing a college degree in engineering, working more than 30 hours a week to support himself, involved in a great relationship and looking forward to marriage and starting a family. “Life is good," he says.
  • Chad’s advice to others with CF: “No matter what, NEVER give up. It’s your life, and you only have one, so take charge and care of yourself!”


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.

Direct download: ChadBrownInterviewb.m4v
Category:podcasts -- posted at: 10:27am EDT

Episode #0079 Chad Brown Believes in Laps for Life with Cystic Fibrosis

Chad Brown is 27 years old with cystic fibrosis and lives in Seattle, Wash. Chad took his FEV1’s from 29% to 58% through the power of swimming. He previously was listed for a double lung transplant, and now he is getting his college degree, working to support himself, and exercising for life! Chad moved from Memphis to Seattle a few years ago and with a new CF team and new therapy and exercise discipline, he is LIVING, BREATHING and SUCCEEDING on a daily basis.

  • Chad was born in Tennessee and was diagnosed at birth.
  • “Growing up I was always treated very differently and in many ways babied. This temporarily helped me cope with the disease, but eventually it took a negative toll on me," Chad says.
  • Insurance issues forced Chad to move to the state of Washington. “Washington has a user friendly state insurance program for people with cystic fibrosis."
  • “For me, along with my therapies, swimming has kept me alive and healthy. When I first started swimming, I could barely swim a lap. I now swim 45 minutes ... 5 days a week!”
  • Chad is pursuing a college degree in engineering, working more than 30 hours a week to support himself, involved in a great relationship and looking forward to marriage and starting a family. “Life is good," he says.
  • Chad’s advice to others with CF: “No matter what, NEVER give up. It’s your life, and you only have one, so take charge and care of yourself!”


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.

Direct download: ChadBrownInterview.mov
Category:podcasts -- posted at: 3:32pm EDT

Episode #0078 CF Travel Tips - Isabel Stenzel Byrnes

Isabel Stenzel Byrnes is 37 years old with cystic fibrosis and is living in Northern California. Isabel is a wanderlust, is post-transplant for five years, and is co-author (with her sister, Anabel) of the book, The Power of Two. Isabel has worked as a social worker and health educator and is LIVING, BREATHING and SUCCEEDING on a daily basis.

  • Isabel, along with her twin sister, Anabel, and family, has traveled the world. She has visited 12 countries and 41 states in the USA. Isabel started traveling at age eight and lived in Japan for one year.
  • Isabel was born in Southern California, diagnosed at birth, and had an active childhood, loving the outdoors and such sports as swimming, jogging and hiking.
  • Isabel graduated from Stanford University, competes in the Transplant Games, and most recently started playing the bagpipes.
  • “When traveling, I make sure I have the CF doctor contact info in the city I am traveling to, take extra prescriptions, wash my hands a lot, drink lots of water, and ALWAYS carry-on my medications," Isabel says.
  • Post-transplant, Isabel continues to travel and has added a mask during airplane travel.
  • “I have lived a very privileged life, and CF has taught me to be very disciplined. Everyone with CF is a mentor to me,” Isabel says.
  • Isabel’s advice: “Do not limit yourself, and allow yourself to dream.”

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

The Power of Two: A Twin Triumph Over Cystic Fibrosis
by Isabel Stenzel Byrnes, Anabel Stenzel

"Born in 1972, twins who share this life-threatening disease give an honest portrayal of their struggle to live normal lives, their interdependence, day-to-day health care, the impact of chronic illness on marriage and family, and the importance of a support network to continuing survival."  (provided by publisher)

Edition: illustrated
Published by University of Missouri Press, 2007
ISBN 0826217540, 9780826217547
280 pages

To order, click here

 

Direct download: CF-TravelTips.mp3
Category:podcasts -- posted at: 7:32pm EDT

Episode #0077 Julie Desch - Nutrition and CF

Julie Desch is 48 years old with cystic fibrosis and lives in Northern California. Julie is a single mom with two fabulous children. She works from home running a non-profit – New Day Wellness (www.newdaywell.org) -- and is LIVING, BREATHING and SUCCEEDING on a daily basis.

  • Julie has realized the benefits of nutrition and exercise. At New Day Wellness, Julie coaches nutrition, fitness, stress management and disease management to people with chronic illnesses – many with CF.
  • Julie was born in Nebraska and was diagnosed at birth. She is the youngest of seven siblings, attended Stanford University, and enjoys golf, running, weight training and reading.
  • "I enjoy sharing my thoughts on nutrition, wellness and exercise on my blog (www.sickandhappy.com). This is a great way to get the word out there," Julie says.
  • Julie’s “junk” foods include pretzels, yogurt and frosted mini wheats dipped in peanut butter.
  • “I am a firm believer in supplements such as fish oil, NAC and additional vitamins, but ALL are with doctors approval," Julie says.
  • Shakes and smoothies with protein added are a must-have when Julie is not feeling well or needs an extra boost.
  • “Eat early and eat often, and make sure you are eating lots of fruit, vegetables and protein – I eat a lot of the right foods."
  • On gaining weight: “Get involved in exercise, and especially weight training, and eat a lot," Julie advises.
  • Julie’s advice to others: “Hope ... and be compliant and aggressive to keep your lungs clear.”


This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 11th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Direct download: Julie-Nutrition2.mp3
Category:podcasts -- posted at: 2:39pm EDT

Episode #0076 Paul Drury - Giving Back to the CF Community

Paul Drury is 42 years old with cystic fibrosis and is post-lung and -kidney transplant. Paul is happily married, working for the Cystic Fibrosis Foundation (Connecticut Chapter), a mentor to the CF community, and LIVING, BREATHING and SUCCEEDING on a daily basis. 24/7 for the CF community is what Paul Drury is all about. Not only does he live with the disease; Paul works for the CFF in fundraising and speaks to many people with CF on a daily basis.

  • Paul was born in Chicago - one of six children - and was diagnosed at age two due to “failure to thrive." He grew up in Connecticut and attended the University of Connecticut.
  • “Growing up with CF was a very private matter, and I jumped into the world of CF post-transplant," Paul says.
  • Paul believes “working for the Cystic Fibrosis Foundation lets me give back to others and have a major impact on their life by giving them HOPE. It makes me feel good."
  • Paul gives back at the CFF by doing fundraising for a cure and by speaking at events to raise awareness. He speaks to families and patients on a daily basis. “ I am like the poster adult for the CF community," he says.
  • Paul also is an artist and “gives back” by doing paintings (pointillism) for various CF events.
  • Paul’s biggest challenge on a daily basis: “Staying healthy.”
  • Paul’s advice: “Do your meds, exercise, nutrition ... and sometimes laughter is the best medicine."

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 10th in a series of of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Direct download: PaulDrury-GivingBack2.MP3
Category:podcasts -- posted at: 2:28pm EDT

Episode #0075 Living with CF is All about Teamwork

Gunnar Esiason, a 17-year-old with cystic fibrosis, is a high school senior. Gunnar is actively involved in sports, being compliant, gearing up for college, and a team player in all aspects of his life.

  • Gunnar was diagnosed at age two and lives on Long Island with his family.
  • “CF has obviously shaped my life but does not get in the way of my being a normal teenager,” Gunnar says.
  • Like an athlete in team sports, Gunnar has a team of doctors and health care providers to make sure he is on top of his game.
  • “My CF team consists of my physician, dietician, nurse, respiratory therapist, social worker, and sometimes specialist in other areas as CF affects other parts of the body,” he explains.
  • “Besides my medical team, my family and friends are also a big part of my team. The more they know about me, the better they can help, and I can win the battle with CF."
  • Gunnar believes that being honest and truthful with your team is the key to succeeding in life and with cystic fibrosis.
  • Gunnar’s advice to others with CF: “Always communicate with your CF team. The more info you can give, the more your team can help you maintain good health, especially as you become more independent and move on to college.”

This podcast was made possible through and unrestricted educational grant from EURAND to The Boomer Esiason Foundation.

Direct download: Gunnar-Teamwork.mp3
Category:podcasts -- posted at: 3:08pm EDT

Episode #0074 Pre-Transplant – Gearing Up for New Beginnings

Jerry Cahill is 52 years old and is Living, Breathing and Succeeding with cystic fibrosis. Jerry talks about being listed for a double-lung transplant. Exercise has been a key factor in his life to keep his lungs clear and continues to be important pre-transplant.

  • Jerry grew up in Brooklyn, NY. He attended the University of Connecticut, competed in track & field specializing in the pole vault, worked in the apparel industry for 26 years, coaches track & field and a prep school, and volunteers at the Boomer Esiason Foundation as he awaits a double-lung transplant.
  • “Maintaining a positive attitude and being involved with people and events is key as I await the call,” Jerry says.
  • “As my disease progresses due to shortness of breath, and my quality of life deteriorates, it is time to move on to the next step – transplant,” he says.
  • Jerry believes he has been preparing for a transplant his whole life, as it is just another part of the battle with CF. “With CF, you always need to be prepared and RE-INVENT yourself!”
  • Jerry’s advice: “Stay active and involved, have a great team of doctors that you believe in, have a great support team of family and friends, fundraise, and gear up for NEW BEGINNINGS as the best is yet to come!"

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 9th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Direct download: PreTransplant.mp3
Category:podcasts -- posted at: 3:52pm EDT

Episode #0073 Better Living Through Nutrition – Power Up the Body

Gunnar Esiason is 17 years old with cystic fibrosis. He's a high school senior and actively involved in sports, being compliant, and gearing up for college.

  • Gunnar was diagnosed at age two and lives on Long Island with his family.
  • "CF has obviously shaped my life, but I am fortunate to have a great family and friends,” Gunnar says.
  • Gunnar loves to eat. Some of his favorite foods include steak, pizza, hamburgers, shrimp and carrots.
  • “I take my enzymes with snacks and meals so my body can absorb all the nutrients from my foods and help me to gain weight. Also, if I don’t take my enzymes, I will get stomachaches, and that is very uncomfortable," Gunnar says.
  • Gunnar keeps his enzymes in a pill box and always carries them in his pocket or backpack.
  • “I usually try and have four meals a day and snacks between meals, and I make sure that I have a lot of OPTIONS with my food choices. I also make milkshakes to get extra calories."
  • Gunnar’s advice on nutrition to others with CF: “Take your enzymes to help you stay healthy and keep your weight on and be energetic."
  • “My long-term hopes and dreams are to live a long and full, healthy life and play sports till I am 60,” he says.

This podcast was made possible through an unrestricted educational grant from EURAND to the Boomer Esiason Foundation.

 

Direct download: Gunnar-Nutrition.mp3
Category:podcasts -- posted at: 8:24pm EDT

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