20 years old with CF, athletic, attending college, and from Tennesse
Hobbies include soccer (plays on varsity team), hiking, cross-stitching
Watching Buffy & Vampire Slayer with friends and Callie is a huge Sporting Clays fan
Callie believes that we all need to “jump the fear” with CF.you never know what’s going to happen in life… big fear of the unknown things just happen so ENJOY!
Family “24 hour rule” get over things in life and move forward…
Callie and her family believe you should not get stuck in CF.
CF opens doors!
Callie loves life and always finds joy in life
Callie’s advice… “We all need people in life, we cannot do on our own
This podcast was made possible from an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
CF Podcast 153: CF, Living in Two Worlds, the Healthy and the Sick with Jen Eisenmann
Today we meet Jen Eisenmann, a 44-year-old living, breathing, and succeeding with cystic fibrosis. Diagnosed at 12 months old, Jen grew up similarly to most other kids, other than having to take enzymes and do occasional chest percussions. Because her parents had never heard of cystic fibrosis, they were wary of her participation in athletics, and so directed her in the direction of music as an extracurricular activity.
* At 22 years old, Jen visited a CF clinic for the first time.
* She had, admittedly, been naïve about the seriousness of CF and the need to care for herself.
* Her new doctors told her she had to change her ways to survive.
Listen in to the latest CF podcast to hear Jen’s entire story.
This CF Podcast was made possible through an unrestricted, education grant from Genentech to the Boomer Esiason Foundation.
CF Podcast 151: Self Management and Pursuing Goals with Cystic Fibrosis
Today we meet Jessie Ennis, a 22 year old with CF who was born and raised in Dublin, Ireland. Because of a family history of the disease, Jessie's parents had her tested for CF before she was six weeks of age. In spite of CF, she had a relatively normal childhood - growing up with her brother and a series of foster kids - and remained healthy through high school.
Now Jessie:
studies health and society in college,
is currently visiting and working a summer job in San Diego,
and has taken up surfing and skiing.
To learn more about Jessie and the ways she manages her disease while pursuing her goals, please listen to her podcast here [insert link].
This educational podcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.
The fourth episode of the Own Your Feeding Tube video podcast series discusses some of the social questions that tube feeders, or potential tube feeders, may have when it comes to a new feeding tube. Obviously, it’s a pretty noticeable device. I think the social hurdle was really the biggest one that I had to overcome. With that being said, once I realized the benefits of the feeding tube, especially in my life, it was an easy hurdle to get passed. Here, the message is that I really want you to own it. What is it? The feeding tube. If the feeding helping make your life easier, then don’t worry about what it looks like. You never know where it will lead you.
CF Podcast 150: Sean Sullivan, Being Compliant with Cystic Fibrosis
Today we meet 40 year old, Sean Sullivan, who was diagnosed with CF at 16 months after his parents grew concerned about his chronic cough and lack of weight gain. Sean is the oldest of six kids and is the only person in his family who has CF.
ïHe grew up extremely active – playing basketball, baseball, and swimming.
ïHis doctors encouraged his parents to treat him the same as their other children.
ïFrom a young age, he learned to be not only medically compliant but also stick to an active lifestyle.
ïNow 6 months post transplant, Sean is even more vigilant than ever while taking care of his disease and its new challenges.
This podcast was made possible through an unrestricted educational grant from Gilead to the Boomer Esiason Foundation.
CF Podcast 149: Exercising with Cystic Fibrosis featuring Jillian McNulty
Today, we meet Jillian McNulty, a 38 year old woman living, breathing, and succeeding with cystic fibrosis in Ireland. Growing up as one of four kids, she is outgoing and constantly challenges herself to stay on top of her disease.
- During her childhood, Jillian was never hospitalized for an extended length of time.
- In her early thirties, Jillian's health started to decline, and so she made the decision to push herself with exercise.
- After seeing an ad for a marathon while she is in the hospital, Jillian decided to sign up and start training.
- Since then, she continues to push herself by running, walking, and cycling on a regular basis and by competing in races.
This podcast was made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Today, we meet Chris Peacock, a 26 year old native of Durham, UK who loves sports, poker, and spending time with his girlfriend and friends.
- Chris suffered a collapsed lung in 2011.
- He stepped out of his comfort zone and started dedicating time to exercise and now walks/runs 2 miles every day.
- Because of his health issues, he is on home oxygen. But after starting his exercise regime, he only uses it at night and hopes that one day, with continued fitness, he will not need it at all.
- Chris says that his friends generally don't treat him any differently, but don't fully grasp how serious his disease is because he never lets it slow him down.
This CF podcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.
Meet Tim Wotton, 44 years old, with CF. Tim is from London, U.K. He was an international junior field hockey player, works full time as a business consultant, and continues to play hockey and visit the gym regularly.
Tim is a loving husband, father, and has two brothers, one of which is a twin. Tim is loving life with his family and proving everyday that he is OWNING IT!
Tim discusses CF and starting a family through in vitro fertilization.
It took Tim and his wife 6 IVF cycles to have their son Felix.
Tim’s son’s name Felix is Latin for lucky and Greek for happy.
Tim see’s all of his “tomorrows” in Felix
Tim has his own blog and book titled ‘How Have I Cheated Death?”
Tim’s Quote: “Everyone needs to row their own boat, with CF”
“Exercising with CF Pre & Post Transplant” – Lar Brennan
Lar Brennan, 30 years old post transplant with CF, born and raised in Wexford, Ireland and was diagnosed at 9 months of age. Lar is an athlete, sports enthusiast, and passionate about fitness. Lar received a double lung transplant on November 24th 2013.
Lar studied fitness in college and is now a fitness instructor. Since his transplant Lar does everything he can to raise awareness and empower people with CF to excel in everyday life. Lar is RELENTLESS in his quest to stay fit and beat CF. Lar believes that through the “power of exercise” he cannot fail…
Lar states: “you need to stay positive and believe in yourself”
Lar’s quote: “Smile and wave…”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Lizz Kaup, 34 with CF, born and raised in California and currently living in Tecumseh, Oklahoma. Lizz was diagnosed at age 3 and is currently working as a senior social worker at a medium-secure juvenile facility and recently completed her program at East Central University.
Lizz is active in her church and loves to travel. Lizz is always on the lookout for her next adventure. Due to her low FEV’s, Lizz exercises with oxygen and is RELENTLESS in her quest to stay fit and beat CF. Lizz has found that through the “power of exercise” she cannot fail with CF.
Lizz was hospitalized a lot growing up between the ages of 13 - 18 but states “My parents were amazing and taught independence”.
Lizz started to exercise consistently due to the decline of her lung functions to help delay a double lung transplant. Lizz made a commitment to exercising by doing treadmill for 30 minutes, 7 days/week. “It was difficult but I noticed slow improvement in my strength.
Lizz currently does weight training, treadmill, and biking.
“For me, the rewards of exercise include muscle tone, breathe a little better, and more energy”.
Lizz did her first 5K event, the Dirty Thirty. “It was a mud run (with obstacles) and I did it with my oxygen tank”.
“Coping with CF is not always easy… but I maintain a heart of gratitude, thinking of the good things in life and the great support of my family” states Lizz.
Lizz’s Tips:
“Just start”
“Have a support staff”
“Faced with challenges… ALWAYS look for the silver lining”
“ Continue to fight!”
“Life is an Adventure… GO for it!”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
“Traveling with Cystic Fibrosis Pre & Post Transplant” – Anna Modlin
Anna Modlin, 32 with CF, born and raised in the Bay area and had a double lung transplant on November 22nd 2010. Anna was diagnosed at 18 month of age, had a fairly normal childhood, hospitalized for the first time at 4 years of age and then not until junior high school. Anna graduated with a Masters in Counseling Psychology and her hobbies include cooking, spending time near water, and post transplant has become passionate about exercise. Anna, a true fighter, competes in the Transplant Games and gives back by volunteering in the CF community. Anna is LIVING BREATHING SUCCEEDING, passionate about living and “The hero of her own story…”
Anna prepares a travel list before ever adventure.
Some things on the list include: Mira Lax, masks (N95), hand sanitizer, Clorox wipes, and an extra lithium battery for her glucose meter.
Anna always “carries on” her medications, has a letter from the doctor, washes hands frequently, and only drinks bottled water on trips (never tap water…). “Also I carry extra scripts…” states Anna.
Anna will always request a refrigerator at hotels but if not available will use an ice bucket at hotel.
Insurance… just in case there is a problem with flights or getting sick while travelling, Anna always purchases travel insurance. Anna likes Travel Guard. (www.travelguard.com).
Sinus issues? Anna travels with Neil Med saline packets for sinus rinses and uses distilled water.
“Since constipation is common for normal people when travelling, people with CF should use Mira Lax to help combat this problem.
Anna’s Travel Tips
Before: check list & chargers/adapters, and pre board.
During: Hydrate, Snack, Positive attitude
After: Rest
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Lindsay Shipp:The Power of Exercise and Nutrition with CF
LINDSAY SHIPP, 30 years old from Madison, Wisconsin currently living in San Diego, CA for the past 7 years and studied classical ballet for over 20 years. Lindsay’s hobbies include running, spinning, heated yoga, and nutrition.
Lindsay was diagnosed at 9 months of age.
“I had a normal childhood and traveled the USA competing in dance,” states Lindsay.
After 20 years of ballet Lindsay stopped exercising and her lung function dropped considerably
“When I stopped dance and exercise I started to get sick a lot more and my lung function dropped drastically… so I started the long uphill battle back to exercising with treadmill, spinning classes, and eventually running outdoors. It took months to get back in shape and clear out my lungs,” states Lindsay.
Living with CF and exercising is a “journey…”” and that journey is what keeps Lindsay going and evolving.
Lindsay’s motivation to exercise is her CF and clearing out her lungs and “coughing it out”.
Lindsay’s goal is to run the Boston Marathon in 2015.
Lindsay’s advice…”Get out there and do any type of exercise” It’s all about the journey…
This CF Podcast is made possible through an unrestricted educational grant from GILEAD to the Boomer Esiason Foundation.
The "I Believe" video series is a series of podcasts that features people in the CF community sharing their beliefs on what it takes to live, breathe, and succeed with CF.
In this episode, the discussion focuses on Belief in exercise and its importance to everyday health. While people with CF exercise and remain active in different ways, all four people featured in this video Believe that it strengthens and clears their lungs, and allows them to be strong both mentally and physically.
Thanks to AbbVie Inc. for the promotional support and commitment to the cystic fibrosis community, which makes this program possible.
Joe, now 33 years old, was diagnosed with CF at age 5, and also had a sister who was diagnosed with CF. He currently resides in Norfolk, Virginia with his fiancé Jennifer with whom he shares a love of riding motorcycles. Joe works as a Director of IT and enjoys practicing photography on the side.
Joe Sleeper is LIVING BREATHING SUCCEEDING and determined that he WILL NOT FAIL…
Joe has never defined himself by his cystic fibrosis.
After heading a rebellious downward spiral in his teen years, he regrouped and took control of his CF after his sister passed away from the disease. “I had to regroup and take control of my life when my sister was gone. I was always sick with infections, my weight dropped to 118 pounds, and my PFTs were in the 20s… not a good thing,” stated Joe.
“I wanted to change… I did NOT want to be sick… the light bulb went on in my head and I took control. I went to Barnes & Noble and started looking at fitness magazines and started reading Muscle Magazine. I also started going to the gym and started lifting weights,” states Joe.
Joe noticed he started gaining weight in a few weeks and after several months his PFT’s went up. “Over time I gained over 50 pounds and my PFT’s went from 20% to 58%.”
Joe’s biggest challenge with CF is time management but he is confident that he will continue to “Breathe Easy” with his fiancée, Jennifer. – “My greatest support system along with my parents”.
“Being disciplined with my CF treatments and my exercise is an investment I make so I can enjoy life” states Joe.
Joe’s recommendations to young people with CF rebelling like he did: “CF today is a different game – It’s NOT a loosing game. You can and will live well past 30 years old. YOU are NORMAL and YOU are worth it!”
What Joe wants people to know about him: “I am not a CF patient, I am just Joe, a guy that love riding motorcycles.”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
“A Day in the Life of a CF Mom/Caregiver: Catherine Hopkins”
Catherine Hopkins is facing the challenge of balancing a full-time job as a vet technician while making it possible for her 3 year old son, Philip to LIVE BREATHE SUCCEED with CF. Catherine and her husband, David, knew the diagnosis was a possibility just 8 weeks into the pregnancy and dove into research immediately. Since then, they have relied on their faith, friends, and family for support throughout their journey.
When Philip was diagnosed at 3 weeks old, they jumped into educating themselves about CF and therapies. Research and education are two of the most important things as a caregiver facing the challenges of CF.
“We have been lucky,” Catherine states. In three years Philip has never been hospitalized or had any major scares.
At just 3 years old, Philip is brave in handling his therapies. “He’s my hero,” states Catherine. She is glad he was diagnosed young because it is all he knows.
Catherine is a CF mom, but she is also a normal mom who wants the same things all other moms want for their children.
Catherine and her family don’t think twice about the everyday responsibilities of a CF caregiver. “It’s just a part of our life,” states Catherine.
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Bobby Bebber, 28 years old and living in Miami, Fla., was diagnosed with cystic fibrosis (CF) at age two. Bobby has had three liver transplants and a kidney transplant, and he also has CF-related diabetes, but he continues to fight on and NEVER give up. Bobby, who discusses overcoming all obstacles with CF, is LIVING BREATHING & SUCCEEDING.
Bobby grew up pretty fast. He was in the hospital a lot during his childhood, including for three liver transplants (October 1987, November1987 and May 2001). Bobby’s mom donated a kidney to him.
“My CF has mainly been digestive issues, but now the respiratory component has kicked in, and I am now listed for a double-lung transplant at Duke Medical Center,” Bobby says.
Bobby loves sports and played soccer and intramural basketball in high school. He also is passionate about horse racing. “My uncle owns a few race horses,” he says.
“The hardest part about living with CF is not having the lung capacity to do what I like … Being on oxygen limits you,” Bobby says.
Bobby’s biggest accomplishment was graduating college, because “I never thought I would do it,” he says.
“My goal is to visit all 50 states and live to be 50 years old,” Bobby says.
Bobby’s recommendation to others with CF: “Never give up. No matter what people tell you, be a fighter!”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Rick Lerz is LIVING, BREATHING and SUCCEEDING after a double-lung transplant.
Forty-five-year-old Rick grew up Queens, N.Y., and was diagnosed with cystic fibrosis at six months. He now is married to his caring wife, Leigh, and the proud father of their 15-year-old daughter, Marty.
Rick, who has spent more than 20 years in the medical field, became a registered nurse in 1990. One of his hobbies includes breeding Sharpie dogs.
• Growing up, Rick’s life was pretty normal and included exercise and bike riding. But his health started to go downhill when he was 26.
• “I was listed in March of 2010, and I was blessed to have a very supportive family,” Rick says.
• “The first thing I noticed post-transplant was that I could BREATHE… I could take a deep breath without coughing… it was truly amazing,” he says.
• Post-transplant, Rick became the “can do” dad. “I was able to take my daughter to the mall and walk around with her and shop. That is a great feeling,” Rick says.
• Rick’s recommendation to people with CF who are thinking about a transplant: “Fight your depression, stay active, and have a strong support team you can talk to.”
• “I have a new lease on life, and I am a productive, normal guy again. I am very thankful to my donor family,” Rick says.
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…”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
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.
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.
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Direct download: PALS2.mp3
Category:podcasts
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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.”
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.
Danny Ferrone, a 26-year-old with cystic fibrosis, lives in Illinois and competes in triathlons. Danny is going to school to be a fitness instructor; he also is the founder of the Fight Forever Foundation.
Danny grew up playing baseball, soccer, football, BMX biking and basketball. “My parents believed in keeping me active,” he says. “I returned to school to be a fitness instructor so I can do what I love in life and stay healthy.”
Besides vigorous exercise, Danny believes in good nutrition as part of his programs to stay healthy. “I eat a lot of fish, pasta, fruit, veggies, and try and stay away from dairy,” he explains.
Danny likes variety in exercise training, so he has added swimming, yoga and boxing (mixed martial arts) to his training routine. Danny has competed in four marathons (best time: 4hours, 18minutes) and four triathlons, including a Half Ironman.
The biggest challenge Danny faces related to exercising and CF is dehydration, but his secret is a lot of water, electrolytes and drinking salt water.
“Exercising with CF can be uncomfortable, but throw yourself into it and be HONEST with yourself … you will feel better,” he says.
Danny’s recommendation to others with CF: “Challenge yourself, keep pushing, and remember you are not alone – fight hard.”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 12th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Maggie Sheehan, 22 years old with cystic fibrosis, talks about her great experiences attending the CFRI Retreat in Northern California. The retreat takes place off the beaten path under the “redwoods," just minutes from Stanford Hospital. CFRI is a great organization that empowers the CF Community to attain the highest possible quality of life.
The CFRI Retreat has been in existence since the 1990s. Maggie has been attending for the retreat for five years, and scholarships are available.
“Activities at retreat include rap sessions, arts & crafts, sporting events, fun in the sun, and great food!” Maggie says.
To attend the retreat, you must be over 15 years old with guardian, and over 18 years old by yourself. Friends and significant others are welcome to attend and join in the fun.
The retreat is a very safe environment that follows strict guidelines regarding cross infection. Maggie feels that the retreat is “safer than the real world."
“My favorite part of the retreat is the sharing and the talent show at the end of the week,” Maggie says.
Maggie continues to return to the retreat because of the great friends she makes and the awesome connection to the CF community. She feels refreshed at the end of the retreat.
Gwen Shusterman discusses various ideas on FUNDRAISING for a cause.
This year Team Boomer – Fighting Cystic Fibrosis will have over 100 runners competing in the ING New York City Marathon - ALL will be running and fundraising for a cause.
Team Boomer – Fighting Cystic Fibrosis was set up through the Boomer Esiason Foundation to help raise funds for the fight against cystic fibrosis and raise awareness to the importance of exercise for people with CF.
Team Boomer’s goal is to improve the “quality of life” and “lifespan” of individuals with CF through the power of “daily exercise." As therapeutic developments increase the lifespan of CF patients so does the need for further education in the area of exercise.
Gwen believes there is no secret to fundraising: “It’s an art and partly as science ... fundraising is personal so you have to do it in your own style."
“Come up with a game plan: First think of a target number and then think of EVERYONE you know who you can possibly approach,” Gwen advises.
Think outside the box. “People are going to surprise you. All those people I said to put on the list – the acquaintances, your kid’s friend’s parents, an old boyfriend/girlfriend, the person you met at a conference last month – they all add up," Gwen says.
Once you have your list together the next step is setting up a First Giving page: www.firstgiving.com/TeamBoomer.
“Next take your list and send out an email blast with your fundraising page info to ALL your contacts," Gwen says.
Other ideas for fundraising include special events such as happy hour at a local bar, golf events, school events, and many companies have “matching gift” programs.
Why can’t I tell people what my minimum is? “Really, if you entered this kind of event (marathon) then I doubt you’re the kind of person who just settles on the minimum,” Gwen says.
A lot of work? “If you mean does fundraising take time – yes it does! To be successful you have to personalize your story and it’s really important to start early!”
Final thoughts: “I think anyone who is willing to do something like join TEAM BOOMER is amazing. It takes a special person to make this kind of commitment. Use your passion. Good luck!
Walks on the Beach with Angie: A Father’s Story of Love describes Don’s relationship with his beloved daughter, Angela, who had cystic fibrosis. Don Warner and his wife, Linda, did everything they could to give their only child immeasurable love and the fullest life possible, all the while carrying out an aggressive treatment regimen to fight her fatal disease.
Angela was diagnosed at three months of age, and Don recalls how the information they found on CF at the library was alarming and frightening.
“Angie was an active child and a normal high school kid ... very involved in cheerleading,” Don says.
During the final 86 days of her life, as Angie lay in the intensive care unit on a ventilator, the Warners were surrounded by loved ones. The grief and loss that Don and his wife experienced prompted him to write a book and create a lasting legacy in her honor.
Angela loved vacationing with the family in Laguna Beach, taking walks on the beach at night star gazing, and having great conversations about life.
Don Warner’s advice to CF patients and their families: "Keep fighting every day."
Don Warner’s recommendations to others who experience the loss of a child from a fatal disease: “Whatever pain you are feeling, it’s ok. Surround yourself with loved ones, and have faith and hope that you will reunite some day."
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 10th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Dan Palumbo, 53 years old with cystic fibrosis, is married and the proud father of twins who both are in law school. Dan has his own advertising agency, but due to the progression of CF, he is considering disability so he can spend more time taking care of his health. Dan is living, breathing and succeeding with CF.
Dan was diagnosed at one month of age in Wilkes-Barre, Penn.
Dan graduated college with a degree in communications and advertising and then worked at a local TV station before opening up his own advertising agency in 1980.
“I stay very compliant and manage my health because I have goals and dreams and I want to achieve things," Dan says.
Dan is considering disability because, at age 53, it is getting tougher to get through the day with all the treatments and a full-time job.
“Disability may be my only choice if I want to stay alive and watch my son and daughter start families – I want to be a grandfather," Dan says.
Dan’s biggest fear about disability is the loss of a lot of his business relationships/friends, but he feels his health is more important at this point in time.
“I am a published songwriter, and I will exercise more and do more treatments once I go out on disability. It’s all about MORE treatments to stay healthy with CF," he says.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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)
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.
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.
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.
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.
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.
Title: Episode #0072 Parents “Letting Go” as Their Child Becomes
Independent with CF
Donna Dorsett, Mom with beautiful daughter with CF shares her feelings on
“letting go” as her daughter becomes more independent attending college away
from home. As a parent you never let go… you let go physically but not
emotionally.
- Donna has 4 children (one with CF), divorced and living in New Jersey.
- “Our family is very close and we do a lot together – family is extremely
important” states Donna.
- Kristyn, her daughter, was diagnosed at 18 months and is now attending the
University of Scranton.
- When dealing with the ups and downs of cystic fibrosis Donna gets her strength
from family.
- “I never limit my daughter due to CF or treat my daughter as being sick”
states Donna, “Kristyn is not sick… she gets sick…”
- “My daughter has dreams and goals and therefore I need to let go so she can
pursue them…”
- Donna’s advice, “Look beyond the disease… look at your son or daughter… CF
cannot be #1 and allow them to live the life that you worked so hard at giving
them”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 8th in a
series of 12 made possible through and unrestricted educational grant from
Genentech to The Boomer Esiason Foundation.
Title: Episode #0071 Exercise-The Key to Being Compliant on a Daily
Basis
Gunnar Esiason, 17 years old with cystic fibrosis (CF), high school senior,
actively involved in sports, and gearing up for college
- Gunnar was diagnosed at age 2 and resides in Long Island with his family.
- “Growing up with CF is an added burden but being compliant to my therapy and
exercise is the key to ” states Gunnar “.
- Currently a senior at Friends Academy, Gunnar is looking at many colleges and
universities including: Boston College, Bucknell, and Richmond.
- Gunnar’s favorite sport is hockey… “I am always moving on the ice and the
exercise makes me cough which is a great form of airway clearance”, states
Gunnar
- “Exercise, along with my daily medication/therapy routine is KEY to keeping me
healthy. I skate 45 minutes a day and have 2 games a week”
- Gunnar does not let CF get in the way of him living his life to the fullest…
“I do not let CF create obstacles in my life – I make sure it does not!”
- Gunnar’s advice: “Be active everyday! Cheating on your therapy = cheating on
yourself… GET OFF THE COUCH & MOVE!”
This podcast was made possible through and unrestricted educational grant
from EURAND to The Boomer Esiason Foundation.
Title: Episode #0070 Succeeding with CF in the Career World Through
Compliance with Cris Dopher
Cris Dopher, 37 years old with cystic fibrosis (CF) is enjoying his career in
the Fine Arts as a professional set/lighting and window designer for many
shows/department stores including Broadway productions. Adhering to his daily
therapies, Cris affords himself the opportunity to enjoy the financial awards of
a career, run marathons, and socialize in the game of life despite having cystic
fibrosis
- Cris grew up in California and Missouri, was diagnosed at age 4 due to
“failure to thrive”, and currently resides in New York.
- Cris has always been focused on goals and his first job, at age 16, was typing
a book for an author.
- “As long as I can remember I was out there in the working world… I worked at
MacDonald’s, was a receptionist for student housing in college, and worked in
tent theatre at college for hands on experience”, states Cris
- Cris has 2 bachelors degrees and 2 master’s degrees that include a Masters of
Fine Arts from New York University.
- The biggest challenge Cris faces with CF on a daily basis is TIME MANAGEMENT
but, according to Cris, “it’s all worth it!”
- “CF is background noise and it does NOT get in my way of living and enjoying
my life” states Cris.
- Cris recently ran the ING New York City Marathon in 5 hours and 50 minutes and
exercises 5 days/week.
- CBS Evening News recently did a piece on Cris: http://www.cbsnews.com/stories/2008/11/18/eveningnews/main4615319.shtml
- Cris’ formula for success: Compliance = Success. Be rigorous about your
therapies – without your health you cannot be a good worker and enjoy life!
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 7th in
a series of 12 made possible through and unrestricted educational grant from
Genentech to The Boomer Esiason Foundation.
Title: Episode #00689 Gearing up for College with Gunnar Esiason
Gunnar Esiason, 17 years old with cystic fibrosis (CF), high school senior,
playing football and hockey, staying compliant, and spending long hours on
college applications as he gets ready to move onward and upward.
- Gunnar was diagnosed at age 2 and resides in Long Island with his family.
- Currently a senior at Friends Academy, Gunnar is looking at many colleges and
universities including: Boston College, Bucknell, and Richmond.
- “Being compliant is the key to living the life I want to live ” states Gunnar
“I like to be involved with family and friends and always doing something”.
- “The hardest thing about growing up with CF is the time management… but I make
sure I do my therapies so I can play football, hockey, and spend time with my
family and friends being normal”
- Gunnar’s biggest role models have been his parents, “They are always very
positive and pushing me forward” states Gunnar.
- Regarding college life and being independent and compliant… “I have always
been pretty independent growing up so going to college is just the next step in
the process to be even more independent and take care of my health. I always
remember that my health comes first”.
- “ I have CF but I don’t let it stop me from doing things in life, including
going away to college – I control my own destiny…”
This podcast was made possible through and unrestricted educational grant
from EURAND to The Boomer Esiason Foundation.
Title: Med Systems Percussor 5000 – Airway Clearance Focused, Effective,
and Easy
Jim Davis launched Med Systems in 1976 after a very successful career designing
life support systems. Jim, an M.I.T. graduate and accomplished engineer launched
the Electro Flo 5000 percussor for home use, allowing patients to add a valuable
tool to their toolbox of treatment options.
- The Electro Flo 5000 percussor took 5 years to develop and is an
electronically operated jackhammer intended for chest vibration/airway
clearance.
- The percussor is easy to use, weighs on 6 lbs, perfect for travel, and as Jim
states: “Great for going on vacation or the college dorm room”.
- The percussor is self-administered and you can customize your chest pt
treatments, adjust speed and power and focus on each individual lobe.
- Jim states: “The Electro Flo 5000 gives patients great lung clearance from the
true percussor action and is more effective than just vibration.
- The percussor costs approximately $2,500; you need a prescription, and can be
submitted to insurance.
- For more information call Sharon Johnson at 800-345-9061
- Website: www.medsystems.com
Title: CF, College Life, Sports, and Compliance – Sean Bourgeois is
Passionate
Sean Bourgeois, 19 years old with cystic fibrosis (CF) is playing junior hockey
and attending University of Phoenix “online” while he pursues his dreams of
playing hockey for the NHL.
- Sean was diagnosed at age 4 and resides in Maine with his family.
- “My father got me involved in sports and hockey because he thought it would
help my lungs and it’s been the best thing for me” states Sean.
- “Living with CF has NOT prevented me from doing things in life” states Sean
“CF is not going to stop me from reaching my goals”.
- “The hardest thing about growing up with CF is the treatments… but I have to
do them so I can play hockey and spend time with my family and friends.
- Sean’s biggest role models have been his parents, “They are always there for
me and they have gone above and beyond” states Sean.
- Regarding college life and being independent… “I am ready to be responsible
because I have a lot of BIG goals” states Sean.
- “ I want to be the first person with CF to play professional hockey in the
NHL…” This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 6th of 12
made possible through and unrestricted educational grant from Genentech to The
Boomer Esiason Foundation.
Title: CF, College Life, Sports, and Compliance – Sean Bourgeois is
Passionate
Sean Bourgeois, 19 years old with cystic fibrosis (CF) is playing junior hockey
and attending University of Phoenix “online” while he pursues his dreams of
playing hockey for the NHL.
- Sean was diagnosed at age 4 and resides in Maine with his family.
- “My father got me involved in sports and hockey because he thought it would
help my lungs and it’s been the best thing for me” states Sean.
- “Living with CF has NOT prevented me from doing things in life” states Sean
“CF is not going to stop me from reaching my goals”.
- “The hardest thing about growing up with CF is the treatments… but I have to
do them so I can play hockey and spend time with my family and friends.
- Sean’s biggest role models have been his parents, “They are always there for
me and they have gone above and beyond” states Sean.
- Regarding college life and being independent… “I am ready to be responsible
because I have a lot of BIG goals” states Sean.
- “ I want to be the first person with CF to play professional hockey in the
NHL…” This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 6th of 12
made possible through and unrestricted educational grant from Genentech to The
Boomer Esiason Foundation.
Direct download: Sean.m4v
Category:podcasts
-- posted at: 3:09pm EDT
Title: Living & Loving Life with CF Post Transplant – Andrea Eisenman
talks about her “New Life”
Andrea Eisenman, 43 years old with cystic fibrosis (CF), post double lung
transplant 8 years, and engaged to be married. Andrea is volunteering with CF
Roundtable, a newsletter published by adults with CF, and also working on her
film project about CF entitled “Nobody Should Know” and LIVING BREATHING
SUCCEEDING on a daily basis…
Andrea was diagnosed with CF at 9 months, grew up in NYC, and studied
art at SUNY Purchase
“Exercise is key going into a transplant so I used to swim in the pool
using oxygen as my mother walked along the side of the pool holding the
oxygen tank” states Andrea
Andrea was transplanted at New York Presbyterian in April 25th 2000 and
was amazed at what if felt like to take a breath without coughing – “it is
beyond comprehension, I never felt this well”.
“Going into transplant it is extremely important to have a support team
– my mom is amazing!” states Andrea
“Life goes on post transplant and I still have CF but my quality of life
is better”
Andrea competes in the Transplant Games (International Competition for
people that have had a transplant) in tennis, biking, running, and swimming.
Andrea’s advice to others facing a transplant include; investigate good
transplant centers, talk to others that had a transplant, exercise, go to
support groups, and have a strong support group of family and friends.
“ I appreciate being alive – it’s a gift…” states Andrea.
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 5th of 12
made possible through and unrestricted educational grant from Genentech to The
Boomer Esiason Foundation.
Title: Living & Loving Life with CF Post Transplant – Andrea Eisenman
talks about her “New Life”
Andrea Eisenman, 43 years old with cystic fibrosis (CF), post double lung
transplant 8 years, and engaged to be married. Andrea is volunteering with CF
Roundtable, a newsletter published by adults with CF, and also working on her
film project about CF entitled “Nobody Should Know” and LIVING BREATHING
SUCCEEDING on a daily basis…
Andrea was diagnosed with CF at 9 months, grew up in NYC, and studied
art at SUNY Purchase
“Exercise is key going into a transplant so I used to swim in the pool
using oxygen as my mother walked along the side of the pool holding the
oxygen tank” states Andrea
Andrea was transplanted at New York Presbyterian in April 25th 2000 and
was amazed at what if felt like to take a breath without coughing – “it is
beyond comprehension, I never felt this well”.
“Going into transplant it is extremely important to have a support team
– my mom is amazing!” states Andrea
“Life goes on post transplant and I still have CF but my quality of life
is better”
Andrea competes in the Transplant Games (International Competition for
people that have had a transplant) in tennis, biking, running, and swimming.
Andrea’s advice to others facing a transplant include; investigate good
transplant centers, talk to others that had a transplant, exercise, go to
support groups, and have a strong support group of family and friends.
“ I appreciate being alive – it’s a gift…” states Andrea.
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 5th of 12
made possible through and unrestricted educational grant from Genentech to The
Boomer Esiason Foundation.
Title: Episode #0065 Challenges of Health Insurance – Beth Sufian Informs
the CF Community
Beth Sufian, 42 years old and compliant with cystic fibrosis (CF). Beth is
happily married living in Texas, an attorney, serves on the CF Foundation
Advisory Task Force on adult issues and is LIVING BREATHING SUCCEEDING on a
daily basis…
Beth talks about knowing your legal rights and advocating for yourself.
Beth discusses who qualifies for Social Security benefits, Medicare, and
Medicaid.
Learn pointers on how to obtain health insurance for children and adults
with CF and how to deal with increasing drug co-pays.
Beth discusses SSI, SSDI, Adult CF programs, COBRA, pre-existing
clauses, Family Medical Leave Act, and YOUR medical records.
“ Be compliant – take care of yourself first and foremost” is Beth’s
main advice.
“Big is Better when it comes to health insurance” states Beth.
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 4th of
12 made possible through and unrestricted educational grant from Genentech
to The Boomer Esiason Foundation.
Jenny Davison, 39 years old with cystic fibrosis (CF), happily married, the
proud mother of her 10 year-old daughter Dara and LIVING BREATHING SUCCEEDING on
a daily basis…
A little over a decade ago marriage and starting a family seemed to be an
unthinkable dream for adults with CF. Through advancements in treatment of the
disease and being compliant the dream became a reality for Jenny and her husband
Tim.
Jenny Davison grew up in Long Island and is one of 9 children.
“Family is Extremely important to me? states Jenny.
Deciding to have a family when you have CF can be risky business but…
“Starting a family while you are healthy and always being compliant is key?
“It is challenging for a woman with CF to have a child and you and your
husband should know the risks but most importantly, take care of yourself
first? states Jenny.
Jenny maintained her career as a nurse for seven months of her pregnancy
and believes in the importance of a strong support system.
Jenny states: “Although I have cystic fibrosis, Tim and I never regret
having a child… Dara has added so much to our lives?
Jenny’s advice: “Having CF does not mean you stop your life – you just
keep living and have a career, think about getting married and starting a
family… you do what everyone else does – I just have to work a little harder
at it with CF?
“Everybody has something and cystic fibrosis is what I have…?
This “LIVING. BREATHING. SUCCEEDING.? Podcast/Vodcast series is the 3rd
of 12 made possible through and unrestricted educational grant from
Genentech to The Boomer Esiason Foundation.
Jenny Davison, 39 years old with cystic fibrosis (CF), happily married, the
proud mother of her 10 year-old daughter Dara and LIVING BREATHING SUCCEEDING on
a daily basis…
A little over a decade ago marriage and starting a family seemed to be an
unthinkable dream for adults with CF. Through advancements in treatment of the
disease and being compliant the dream became a reality for Jenny and her husband
Tim.
Jenny Davison grew up in Long Island and is one of 9 children.
“Family is Extremely important to me? states Jenny.
Deciding to have a family when you have CF can be risky business but…
“Starting a family while you are healthy and always being compliant is key?
“It is challenging for a woman with CF to have a child and you and your
husband should know the risks but most importantly, take care of yourself
first? states Jenny.
Jenny maintained her career as a nurse for seven months of her pregnancy
and believes in the importance of a strong support system.
Jenny states: “Although I have cystic fibrosis, Tim and I never regret
having a child… Dara has added so much to our lives?
Jenny’s advice: “Having CF does not mean you stop your life – you just
keep living and have a career, think about getting married and starting a
family… you do what everyone else does – I just have to work a little harder
at it with CF?
“Everybody has something and cystic fibrosis is what I have…?
This “LIVING. BREATHING. SUCCEEDING.? Podcast/Vodcast series is the 3rd
of 12 made possible through and unrestricted educational grant from
Genentech to The Boomer Esiason Foundation.
Tiffany Christensen, 34 years old with cystic fibrosis is LIVING BREATHING
SUCCEEDING on a daily basis…
With the help of today’s therapies, cystic fibrosis (CF) patients are now living
longer and achieving more than ever before. Pulmonary treatments are enabling
adults with CF to pursue their dreams by entering college and the career world.
In this podcast, 34-year-old CF survivor Tiffany Christianson talks about the
role of CF in establishing new relationships. Tiffany is the recipient of 2
double lung transplants and the author of the book Sick Girl Speaks. In this
conversation with her, she dives into topics such as the importance of remaining
compliant on a daily basis as well as the tricky issue of revealing your CF to
your newfound friend. Whatever you do, she says, “don’t lose your identity in a
relationship and ignore your CF?.
Key messages in the Podcast include:
Tiffany is a relationship driven person and believes telling about your
CF is good, but that “less is more? at the beginning of a romantic
relationship.
“CF adds more layers to relationships but I am worthy of it!? says
Tiffany.
Tiffany has learned to “stop making my disease my identity? and to start
communicating, enjoying, and having fun in a relationship – “We are a team…?
Relationships involve a lot of work and vulnerability – make sure you do
your homework… “Remember, like all relationships people may not accept each
other due to certain likes/dislikes and that includes CF? states Tiffany.
“Don’t search for your worth in someone else’s arms…? says Tiffany.
Tiffany’s advice: “ CF should be a motivator to get in a relationship.
Relationships enhance your life! I have no regrets!?
* This “LIVING. BREATHING. SUCCEEDING.? Podcast/ Vodcast series is the 2nd of 12 made possible through and unrestricted educational grant from
Genentech to The Boomer Esiason Foundation.
Title: Jerry Cahill – Exercising is Key to Being Compliant with CF
Jerry Cahill, 51 years old with cystic fibrosis is LIVING BREATHING SUCCEEDING
on a daily basis…
With the help of today’s therapies, cystic fibrosis (CF) patients are now living
longer and achieving more than ever before. Pulmonary treatments are enabling
adults with CF to pursue their dreams by entering college and the career world.
“Jerry Cahill – Exercising is Key to Being Compliant with CF,? features Jerry
Cahill, a 51-year-old man with CF. Jerry talks about exercising as a form of CF
therapy, sports improving his quality of life, exercising outdoors to keep his
lungs CLEAR, and the importance of compliancy on a daily basis. Jerry’s
philosophy is NEVER NEVER GIVE UP!?
Key messages in the Podcast include:
Jerry believes exercise and sports have made a major impact on improving
his health and quality of life physically and mentally.
Exercise outdoors to help keep your lungs clear.
“Simple exercises like walking, jogging, stretching, push-ups, quick
knee drills, and lunges help move the secretions and clear out the lungs?
states Jerry
Time management is key to CF and maintaining your daily therapy routine
so you can continue socializing and enjoying the great opportunities and
people in life.
Jerry states; “Do not let CF stop you… just get out there and live life
to the fullest!?
* This “LIVING. BREATHING. SUCCEEDING.? Podcast/Vodcast series is the 1st of
12 made possible through and unrestricted educational grant from Genentech
to The Boomer Esiason Foundation.
Title: Jerry Cahill – Exercising is Key to Being Compliant with CF
Jerry Cahill, 51 years old with cystic fibrosis is LIVING BREATHING SUCCEEDING
on a daily basis…
With the help of today’s therapies, cystic fibrosis (CF) patients are now living
longer and achieving more than ever before. Pulmonary treatments are enabling
adults with CF to pursue their dreams by entering college and the career world.
“Jerry Cahill – Exercising is Key to Being Compliant with CF,? features Jerry
Cahill, a 51-year-old man with CF. Jerry talks about exercising as a form of CF
therapy, sports improving his quality of life, exercising outdoors to keep his
lungs CLEAR, and the importance of compliancy on a daily basis. Jerry’s
philosophy is NEVER NEVER GIVE UP!?
Key messages in the Podcast include:
Jerry believes exercise and sports have made a major impact on improving
his health and quality of life physically and mentally.
Exercise outdoors to help keep your lungs clear.
“Simple exercises like walking, jogging, stretching, push-ups, quick
knee drills, and lunges help move the secretions and clear out the lungs?
states Jerry
Time management is key to CF and maintaining your daily therapy routine
so you can continue socializing and enjoying the great opportunities and
people in life.
Jerry states; “Do not let CF stop you… just get out there and live life
to the fullest!?
* This “LIVING. BREATHING. SUCCEEDING.? Podcast/Vodcast series is the 1st of
12 made possible through and unrestricted educational grant from Genentech
to The Boomer Esiason Foundation.
Title: Jerry Cahill – Exercising is Key to Being Compliant with CF
Jerry Cahill, 51 years old with cystic fibrosis is LIVING BREATHING SUCCEEDING
on a daily basis…
With the help of today’s therapies, cystic fibrosis (CF) patients are now living
longer and achieving more than ever before. Pulmonary treatments are enabling
adults with CF to pursue their dreams by entering college and the career world.
“Jerry Cahill – Exercising is Key to Being Compliant with CF,? features Jerry
Cahill, a 51-year-old man with CF. Jerry talks about exercising as a form of CF
therapy, sports improving his quality of life, exercising outdoors to keep his
lungs CLEAR, and the importance of compliancy on a daily basis. Jerry’s
philosophy is NEVER NEVER GIVE UP!?
Key messages in the Podcast include:
Jerry believes exercise and sports have made a major impact on improving
his health and quality of life physically and mentally.
Exercise outdoors to help keep your lungs clear.
“Simple exercises like walking, jogging, stretching, push-ups, quick
knee drills, and lunges help move the secretions and clear out the lungs?
states Jerry
Time management is key to CF and maintaining your daily therapy routine
so you can continue socializing and enjoying the great opportunities and
people in life.
Jerry states; “Do not let CF stop you… just get out there and live life
to the fullest!?
* This “LIVING. BREATHING. SUCCEEDING.? Podcast/Vodcast series is the 1st of
12 made possible through and unrestricted educational grant from Genentech
to The Boomer Esiason Foundation.
Title: Cystic Fibrosis Institute (CFI) and Dr. Steven Boas
The Cystic Fibrosis Institute (CFI) is committed to supporting those affected by
cystic fibrosis in the Chicago area and to making a difference by being a
meaningful and active source of assistance and advocacy for all CF individuals
and families for dealing with the everyday challenge of cystic fibrosis.
Dr. Steven Boas, a Board-Certified Pediatric Pulmonologist, is dedicated to the
care of children and adolescents with acute or chronic respiratory disorders.
The Cystic Fibrosis Institute was founded in 2003 on the fundamental principle
that every person with CF deserves the opportunity to realize his or her full
potential, to lead as normal life as possible and, despite the many obstacles
they and their families face, share in the joys of life itself.
CFI is a 501(c) (3) Not for Profit organization based in Glenview,
Chicago
Dr. Boas states: “CFI offers services/educational programs for people
with CF and their families.?
CFI develops strategic partnerships with local and national businesses
for support.
CFI offers clinical assistance and supports research investigations
“The Winter Education Retreat being held on February 16th 2008 is our
biggest event and is being held in Glenview, Illinois (just outside of
Chicago)? states Dr. Boas.
Winter Education Retreat focuses on practical issues for people with CF
with the goal of giving people with CF at least one more tool that they did
not have prior to the event.
Dr. Boas is a major advocate of exercise and believes exercise is key or
“just getting people to move…?
More info available at: www.cysticfibrosisinstitute.org or call
847-998-3434
Linda Hood, Mother of Twin Boys with CF, Talks about Transitioning…
Linda Hood from Cincinnati, Ohio talks about growing up with twin boys with CF –
Keith and Kyle – and transitioning to an adult CF center. Linda’s boys were born
4 weeks early and found out they had cystic fibrosis at 6 months of age.
“Finding out my twin boys had cystic fibrosis was the most devastating
thing in my life…? states Linda
Linda states; “the doctors told a horrifying story and said my boys
would not live to 18 years of age?
Linda and her family were proactive and started fundraising for a cure.
Being a caregiver is scary due to concerns/fear of germs at school.
Linda discusses making the transition from pediatric to adult CF center
and the resources available to adults.
Linda gets her support from her husband - “My husband is my strength and
gets me through the tough times…?
“Stay hopeful… do what the doctors tell you to do… do not take
shortcuts,? states Linda.
Linda’s advice: “Let your son or daughter be boys or girls and ENJOY
LIFE!?
Keith and Kyle are in college today and LIVING BREATHING SUCCEEDING.
Justin Carlson, Transitioning from High School to College – The Next Step
to Success.
With the help of today’s therapies, cystic fibrosis (CF) patients are now living
longer and achieving more than ever before. Pulmonary treatments are enabling
adults with CF to pursue their dreams by entering college and the career world.
“Justin Carlson, Transitioning from High School to College – The Next Step to
Success,? features Justin Carlson, an 18-year-old young man with CF. Justin
talks about becoming independent and dealing with doctor’s appointments, CF
therapies, going away to college vs. commuting, and the importance of compliancy
on a daily basis. Justin believes in the importance of the “doctor/patient
relationship? and “taking control of your CF.?
Key messages in the Podcast include:
Taking control of your CF and not letting it catch up on you, even when
you don’t feel sick, is crucial for a good quality of life.
Developing a strong relationship and communicating with your doctor and
health care team, at an early age enhances your independence.
Time-management and “practiced independence and confidence? help prepare
individuals with CF for college and the real world.
The keys to staying healthy are compliance to medications, therapies,
exercise, and good nutrition.
Parents should give their child with CF “reminders? regarding therapy, and
instill independence in them at an early age.
Parents should encourage their child to spend separate one-on-one
“quality? time with their doctor.
* This Podcast is made possible through and unrestricted educational grant
from Genentech to The Boomer Esiason Foundation.
Scott Johnson is 35 years old with cystic fibrosis and LIVING, BREATHING,
SUCCEEDING as he celebrated 6 years post double lung transplant on September
15th. “Dreams do come true,? states Scott, as he gets ready for the Hawaiian
Ironman Championships on October 13th 2007 in Kona, Hawaii. This is the most
prestigious race in triathlon and the pinnacle of most people’s career. The
Hawaii Ironman is the equivalent of the Tour de France, the Super Bowl, the
World Series, and Wimbledon. Scott, competing for Team Boomer, has accepted this
challenge to try and inspire people with CF to make exercise a part of their
normal routine.
Scott grew up in Jacksonville, North Carolina and was diagnosed with CF
at 2 months.
Scott received a double lung transplant on September 15th 2001.
“Exercise and a Positive Attitude? helped Scott make it through the
surgery.
Scott states: “My quality of life with my new lungs is better than
living with CF?.
On Mother’s Day in May 2003, Scott crossed the finish line of his first
triathlon… a gift for himself and his mother Marilyn.
Scott has competed in over 25 triathlons of various distances and is now
ready for the most elite triathlon, the Hawaii Ironman (swim 2.4 miles, bike
112 miles, and run 26.2 miles)
Scott’s family and fiancé, Leanne, will be cheering him on in Hawaii and
Scott will be getting married 3 days after the Ironman competition.
Prior to each race Scott writes his transplant date on his forearm to
remind himself of where he came from and his “new beginning?.
By competing for Team Boomer, Scott is helping to raise money for the
Exercise for Life scholarship for people with CF. Join Scott and the cause:
www.firstgiving.com/cfironman
“Do Not Be Afraid of Death… Be Afraid of the Half Lived Life?
Scott’s words of encouragement for others with CF or facing a
transplant: “Maintain a positive outlook, don’t give up, and keep exercising
– miracles do happen…?
Title: Abby Tranel Wins 2007 Exercise for Life Scholarship
Abby Tranel from Hampton, Nebraska wins $10,000 scholar-athlete award for people
with CF. Abby ran the 1.5 mile run in 10 minutes 19 seconds at Nebraska Wesleyan
University’s track in Lincoln, Nebraska. Abby is a graduate of Hampton High
School in Hampton, NE and graduated with a 3.5 G.P.A. and will be attending
Nebraska Wesleyan University in the fall.
Abby has always been involved in sports including volleyball, basketball,
and track. School activities include the Student Council, Cheerleading,
Speech, Drama, and President of the National Honor Society.
Abby was diagnosed with CF at birth and also has an older sister with
cystic fibrosis that competed nationally in track & field for University of
Nebraska.
“Exercise and therapies for CF have very much become an integral part of
my life and daily routine.? states Abby.
“After a few months of steady running, my lung function tests improved
dramatically. It was not just the test results that kept me going with
running… I just simply felt better, and most importantly felt that I was now
in control of my CF, it was no longer controlling me!? Abby states
confidently.
Abby lives a normal life and does not make a big deal about CF.
“My mom has taught me and my sister to be very independent at an early age
and I thank her for that…?
Regarding college… “I look forward to meeting new people and am beginning
to realize all the opportunities that college and our world has to offer.?
Besides being compliant to her medication and therapy, Abby has learned
the value of exercise, keeping a routine, and following through for positive
results.
“I have realized that if you want to be big you have to dream big… and
that is just what I am doing despite having CF!? states Abby.
Title: Patrick Robinson wins 2007 Exercise for Life Scholarship
Patrick Robinson from Sandown, NH wins $10,000 scholar-athlete award for people
with CF. Mr. Robinson ran the 1.5 mile run in 10 minutes 10 seconds at his
former high school Timberlane Regional H.S. in Plaistow, NH as his mom, dad, and
younger brothers Andrew and Christopher cheered him on. Patrick recently
graduated with a 3.9 G.P.A. and will be attending Boston University in the fall.
Patrick is very involved in sports including skiing, hiking (Patrick is an
Eagle Scout), track, and Ultimate Frisbee and attributes exercise to playing a
major part in keeping his lungs clear.
“Playing the trumpet in marching band also was a great form of airway
clearance? states Patrick.
Patrick was diagnosed with CF at 3 months of age.
Great Strides Walk-a-Thon team “Patrick’s Patrollers? walks every year to
raise money for CFF and a cure.
Regarding college… “I look forward to meeting new people and being more
independent?.
Besides being compliant to his medication and therapy, Patrick goes above
and beyond this daily ritual by running 2 miles everyday.
“I believe in embracing the disease and not running from it? states
Patrick.
Title: Kristin McFall, Time Management and Staying Compliant in Adulthood
With the help of today’s therapies, cystic fibrosis (CF) patients are now living
longer and achieving more than ever before. Pulmonary treatments are enabling
adults with CF to pursue their dreams by entering college and the career world.
“Kristin McFall, Time Management and Staying Compliant in Adulthood,? features
Kristin McFall, a 36-year-old career woman with CF. Kristin talks about
succeeding in life, her career, traveling, and winning the battle with CF on a
daily basis through therapy compliance. Kristin believes in the importance of
“understanding your disease and partnering up with your health care team.? The
podcast is now available for downloading on www.jerrycahill.com beginning on May
4th, 2007.
Kristin discusses the importance of being compliant and proactive as an adult
with CF while maintaining a career and busy social life.
Highlights from the Podcast include:
Taking care of your health and being compliant with medical therapies are
an integral part to being successful in your career as an adult with CF.
The key ingredients to staying healthy and having a better quality of life
are: compliance to medications & therapies, exercise, nutrition, hydration,
and sleep.
CF is a life-long illness therefore you must learn to be an expert with
yourself and revel in the day!
t is important to maintain a partnership with your CF Center and stand up
for yourself.
CF adults must learn to “multi-task? and “stay clear? by being disciplined
with your health care.
Kristin’s “Fabulous 4? tips for being compliant include: bronchodilators,
Pulmozyme, airway clearance, and inhaled antibiotics.
Jo Anne McKinney and Grant Prather make BIG FUN for many pediatric patients with
the BIG FUN BOX. The mission statement: To share with pediatric patients and
their families’ ways to use their imagination to give them comfort and fun in
the midst of stressful situations. The BIG FUN BOX is filled with a stress toy,
folding ruler, colored pencils, pencil sharpener, jigsaw puzzle, HeadGames,
Find’ems, imagination pad, thank you notes, plastic stencil, and playing cards.
“The BIG FUN BOX is filled with imagination and you can let it take you
wherever you want to go…? states Jo Anne
Jo Anne has spent many hours in the hospital with her son Grant, due to
his cystic fibrosis, and they learned to “make their own fun?
The BIG FUN BOX is an activity box for children in the hospital with
chronic illnesses (ages 7 to 12)
The BIG FUN BOX was launched in October 2006 and has delivered over 3,100
boxes in 9 states to 31 hospitals. “Our goal is to raise $2.0 million and
deliver 100,000 BIG FUN BOXES? states Jo Anne.
“The BFB is a great vehicle to rescue patients after being in the hospital
for 5-6 days and you just find out you will be in longer?
The BIG FUN BOX seeks corporate sponsors to bring BIG FUN to children with
chronic diseases. Jo Anne needs to raise $27,000 before 1,000 boxes can go
into production.
The BIG FUN BOX is a 501 c (3) non-profit organization.
Baylor University Medical Center in Houston, Texas held a ground breaking event
with the first ever Adult CF Day. This educational event featured Boomer Esiason
and Dr. Marcia Katz speaking about how we are "living a medical miracle" with
40% of the CF population being adults and living longer with a better quality of
life.
Adults with CF are attending college, have careers, and having families.
Adults with CF maintain a "positive mental attitude" and keep raising the
bar.
With the explosion of the adult CF population "transitioning" to an adult
program is crucial.
Adults with CF are living longer and maintaining a better quality of life.
Adults are mentors for younger individuals with CF and their families.
Baylor University Medical Center in Houston, Texas held a ground breaking event
with the first ever Adult CF Day. This educational event featured Boomer Esiason
and Dr. Marcia Katz speaking about how we are “living a medical miracle? with
40% of the CF population being adults and living longer with a better quality of
life.
Adults with CF are attending college, have careers, and having families.
Adults with CF maintain a “positive mental attitude? and keep raising the
bar.
With the explosion of the adult CF population “transitioning? to an adult
program is crucial.
Adults with CF are living longer and maintaining a better quality of life.
Adults are mentors for younger individuals with CF and their families.
Title: Kyle Connolly Talks about being Compliant, Exercise, and College Life.
Kyle Connolly is a 21 year old college student that “stays clear? by doing
aerosols and vest treatments 3 times per day and exercising on a daily basis to
keep his lungs clear. Kyle works very hard to stay healthy so he can have a
better quality of life and enjoy!
Kyle was diagnosed at 7 weeks due to “failure to thrive?
Growing up with CF was non-eventful until high school when he started
having more infections.
Kyle attends Xavier University in Cincinnati, Ohio and will be a senior
next year.
“Being involved in sports all my life has helped keep my lungs clear!?
Kyle participated in football, baseball, soccer, wrestling, and cross
country growing up and now is a varsity cheerleader at Xavier University.
Kyle also enjoys running and competes in the FLYING PIG MARATHON every May
in Cincinnati, Ohio. Kyle is part of a team and runs the ½ marathon (13.1
miles)
“Time management is the biggest challenge I face daily living with CF but
I just do it – I have no choice if I want to enjoy everything life has to
offer? states Kyle.
Kyle is very excited about all the new drugs in the pipeline for people
with CF.
Bob Hansen, Chairman, CEO, and co-founder of Electromed, Inc in 1992, makers of
Smart Vest, discusses the newest and most advanced airway clearance system
SMARTVEST. The vest is designed for comfort and ease-of-use to support patient
compliance as well as being efficient, portable, and cost effective.
- Smart Vest – airway clearance system or High Frequency Chest Wall Oscillation
(HFCWO) is the mechanical loosening, mobilization and release of excess mucous.
- The Smart Vest is effective, convenient, and comfortable. Patented vest design
(soft fabric & washable) delivers HFCWO with a calmer, gentler, and more relaxed
treatment experience.
- Generator is programmable to assure consistent treatments each day.
- Vest size fits small toddlers to large adults.
- Wheeled Smart Vest Trimeline Carrier travels easily and fits inside airplane
as a carry-on.
- Smart Vest offers lifetime warranty and upgrade policy.
- “Innovation is an important part of our company? states Bob Hansen
- All field staff are Respiratory Therapists.
- Smart Vest is an international company and offers a 24 hour toll free number.
- “The compact size of Smart Vest makes it a great for people with CF going away
to college? states Bob Hansen
- Smart Vest is based in New Prague, MN. For more info call: 800-462-1045.
- Website: www.electromed-usa.com
EXERCISE for LIFE SCHOLARHIP The Boomer Esiason Foundation has created a scholar-athlte award to assist cystic fibrosis senior high school athletes pursuing undergraduate degrees.
- "Exercise is the single most important thing in my life that keeps me healthy... jogging is a universal activity that everyone can partake in without the need for an expensive gm or pool membership" states Jerry Cahill who is a 50 year-old with CF. Jerry has been exercising all his life in spite of having CF. - The goal of the scholar athlete award is to raise awareness, improve the quality of life and lifespan of individuals with CF through the power of daily physical exercise. - The scholarship will be awarded annually based on demonstrated financial need, academic accomplishment and athletic ability in the area of running. All finalist will be timed in a 1.5 mile jog. - Award: 1 female winner and 1 male winner each receiving $10,000. awarded to the college of their choice. - The student/athlete should be jogging on a regular basis and training for the 1.5 mile run. All candidates will be judged on time. - Scholarship launches May 1st 2007 - Deadline July 29th 2007 - For more information and applications go to: www.cfscholarships.com
Brian McCandless is like any average nineteen year old university student
except, like 30,000 Americans, he has cystic fibrosis. On May 16th 2007 Brian
will cycle from Pittsburgh, PA to Tallahassee, Florida and back… to raise
awareness for cystic Fibrosis. Brian will bike over 2,000 miles (25 day trip)
averaging 100 miles per day.
- Brian was diagnosed at 2 months of age due to “failure to thrive? and is from
West Sunbury, PA.
- Brian is a freshman at Slippery Rock University and a member of the cycling
club
- “I believe biking is the best form of airway clearance? states Brian.
- According to Brian “People with CF are often told not to over exert
themselves. I say EXERT ON! No one should ever be told they cannot do something?
- Brian believes the most important factor in maintaining his health is
“exercise and nutrition?
- “My goal for Brian’s Ride is to increase CF awareness, raise money for CF
research, and most importantly, give hope to children who are diagnosed with CF.
- To donate to Brian's Ride or for more information go to:
www.briansride.org
Title: CF Great Strides NYC Walk –
Raising Money for a Cure!
Dawn and Stan Zolek are parents of 3
year old Stanley, who has CF and a 1 year old daughter who is a
carrier of the gene. They are chairing the NYC Great Strides Walk in
their neighborhood, Battery Park City.
The event is “feel good type of day!?
and raises money for research to help find a cure for cystic
fibrosis.
“Stanley is compliant to his
daily routine and does his “work out? (vest treatment) twice a
day? states his dad Stan.
Stanley’s website:
ilovestanleynyc.com
“CF Great Strides is a fun day
with lots of family and community involvement? states Dawn Zolek.
CF Great Strides is a 6.2 mile
walk and is the Cystic Fibrosis Foundation’s largest national
fundraising event. The event has 100 sites nationally and raised
over $32 million last year.
The metro New York area will be
hosting 4 sites for the event:
Battery Park City, NYC on
Saturday, May 19th 9am
Rye Playland, Rye, NY on Sunday,
May 20th 9am
Clove Lakes Park, Staten Island,
NY on Saturday, June 2nd 9am
Bowdoin Park, Poughkeepsie, NY on
Sunday, June 3rd 9am
TITLE: “The Connolly Twins – Transitioning into Adulthood with CF?
With the help of today’s therapies, cystic fibrosis (CF) patients are now living
longer and achieving more than ever before. Pulmonary treatments are enabling
individuals with CF to pursue their dreams by entering college and the career
world
Keith and Kyle Connolly, 21-year-old twin brothers and college students with CF
talk about transitioning into college and adulthood. Keith and Kyle talk about
growing up with CF and the lessons they have learned as they become more
independent and responsible for their own health care. Keith and Kyle’s mother,
Linda Hood, also shares her perspective on raising twin boys with CF and
learning to “let go.?
Keith and Kyle discuss the importance of taking responsibility for their CF
health care while maintaining their busy college schedules.
Highlights from the Podcast include:
Preparation and compliance are integral in making a successful transition
into adulthood with CF.
The keys to staying healthy are compliance to medications, therapies, and
exercise.
Time-management in college is crucial for maintaining health and quality
of life.
Prior to moving away to college, begin to transition into self-ownership
of health care.
It is important to maintain a relationship with your CF Center.
For parents - instill realistic hope within your child, and raise him or her to be independent; through age-appropriate responsibilities related to their health care.
When children leave the home, parents should have confidence in how their
children have been taught to care for themselves.
Title: Action speaks louder than words… “EXERCISE FOR LIFE?
EXERCISE FOR LIFE was created by the Boomer Esiason Foundation to educate, raise
awareness to the importance of exercise & compliance with CF, and to raise money
for college scholarships for people with CF.
The EXERCISE FOR LIFE program serves as an inspirational message to CF patients,
family members & the general public about the benefits of exercise and
compliance to medical advice in the “here and now?
- “Exercise is the single most important thing in my life that keeps me healthy?
states Jerry Cahill at 50 years old with cystic fibrosis.
- Jerry has been exercising all his life in spite of having CF - baseball,
football, hockey, track & field (pole vault) and most importantly
“jogging/running? on a daily basis.
- Doctors and CF centers “talk about it? but we need to get everyone with CF
“doing it? Your lungs are muscles and need to be worked to keep them clear and
strong.
- Besides being “compliant? to medication and therapy routines – exercise should
be part of EVERYONE’S daily ritual.
- Jogging/walking is a UNIVERSAL activity that everyone can partake in without
the need for an expensive gym membership or a pool. Jogging “outside? is key to
oxygenating the lungs and keeping your airways clear.
- “The goal of exercise is to improve the quality of life and lifespan of
individuals with CF through the power of daily physical activity
Title: Action speaks louder than words… “EXERCISE FOR LIFE?
EXERCISE FOR LIFE was created by the Boomer Esiason Foundation to educate, raise
awareness to the importance of exercise & compliance with CF, and to raise money
for college scholarships for people with CF.
The EXERCISE FOR LIFE program serves as an inspirational message to CF patients,
family members & the general public about the benefits of exercise and
compliance to medical advice in the “here and now?
- “Exercise is the single most important thing in my life that keeps me healthy?
states Jerry Cahill at 50 years old with cystic fibrosis.
- Jerry has been exercising all his life in spite of having CF - baseball,
football, hockey, track & field (pole vault) and most importantly
“jogging/running? on a daily basis.
- Doctors and CF centers “talk about it? but we need to get everyone with CF
“doing it? Your lungs are muscles and need to be worked to keep them clear and
strong.
- Besides being “compliant? to medication and therapy routines – exercise should
be part of EVERYONE’S daily ritual.
- Jogging/walking is a UNIVERSAL activity that everyone can partake in without
the need for an expensive gym membership or a pool. Jogging “outside? is key to
oxygenating the lungs and keeping your airways clear.
- “The goal of exercise is to improve the quality of life and lifespan of
individuals with CF through the power of daily physical activity
Title: New Challenges in Obtaining &
Maintaining Health Insurance
Beth Sufian is an attorney and a 41
year-old with cystic fibrosis. She is the Director of the CF Legal
Information Hotline, sponsored by CF Services Pharmacy, which has
assisted over 7,000 people with CF. Beth serves on the CF Foundation
Advisory Task Force on Adult Issues.
Beth talks about knowing your
legal rights and advocating for yourself and children.
Beth discusses who qualifies for
Social Security benefits, Medicare and Medicaid.
Learn pointers on how to obtain
health insurance for children and adults with CF and how to deal
with increasing drug co-pays.
CF Legal Information Hotline
offers free and confidential information on legal rights of people
with CF. Call: 1-800-622-0385 or Email: CFLegal@cfserv.com
Learn about the “golden nuggets?
of HIPAA
“Keep good records? suggests
Beth
COBRA Insurance - Consolidated
Omnibus Budget Reconciliation Act.
Beth gives pointers on
Transitioning to Adulthood.
Beth also talks about Government
Programs:
SSI – Supplemental Security
Income
SSDI – Social Security
Disability Income
Medicaid
Medicare
Beth Sufian’s clients include
many people with CF. She is based out of Houston, Texas and travels
nationally.
Title: Cystic Fibrosis.com Celebrates 10 year Anniversary.
Jeanne Barnett, former computer math teacher and now President of cysticfibrosis.com, talks about her site and how
"it is a support community for those dealing with cystic fibrosis" Launched in
1996 with a friend who had CF, the site was started as an experiment but evolved into a major resource for the CF Community that gives people the opportunity to discuss CF with others.
CysticFibrosis.com is a public website and you do not have to sign up. The site has over 117,372 messages as well as 11,112 threads and 3,396 users 1. Jeanne reads every message and the site has over 1,000 visitors per day 2. Cystic Fibrosis.com (www.cysticfibrosis.com) is a
"place to share and celebrate life!" states Jeanne Barnett. 3. The website is global and includes: forums, blogs, faq's, library, kids, CF Center info, photo galleries, recipes, and a section for newly diagnosed. 4. The forums include topics on adults, families, new diagnosed, nutrition/exercise, transplants, and teenagers/young people. 5. Jeanne is passionate about her site and states;
"The CF Community is ONE family and we are here to support and inspire each other"
www.cysticfibrosis.com
HAPPY 10 YEAR ANNIVERSARY!!!! KEEP UP THE GREAT WORK!!!!
for his coverage of the New York City Post-Marathon Party at Mr. Denney's Pub. Rob has been a Quiet Giant of the Boomer Esiason Foundation for quite a while...and was instrumental in teaching me about podcasting in early 2005.
This Podcast can also be heard on the New York Minute Podcast. The following is Rob's show notes from his podcast.
This is as close as well get to a New York City Marathon special this year on the show. Not bad though. In association with my friend Jerry Cahill, host of the Cystic Fibrosis Podcast, I covered the Team Boomer post marathon fund raiser.
The event was held at a very nice Irish Pub called Mr. Dennehy's. The pub is located at 63 Carmine St. near 7th Avenue South.
And yes I did interview one actual runner in the marathon. I also talk with Jerry about Team Boomer and mix with some locals who talk about their experiences around town.
This episode also includes a promo for an upcoming show by my pal Brother Love.
Sarah Katopodis ran her 1st Marathon in NYC and ran it for Team Boomer – Fighting Cystic Fibrosis, and we are honored!! Sarah raised over $4,000 for the Foundation’s Exercise for Life Scholarship and was presented with a game ball for her unending passion and support for the CF community.
1. Sarah grew up in New Jersey and attended the University of Scranton and has a masters in marketing.
2. Sarah is blessed with a beautiful loving family and has a very supportive husband, Taso, as well as 3 phenomenal sons that keep her running marathons on a daily basis – Alex, Evan, and Steven. All were cheering Sarah on during the marathon.
3. “As a child I used to run with my Grandfather at 6am during the summer at Long Beach Island? states Sarah.
4. Sarah continued here passion for running with a running group while working in Charlotte, NC and ran 2 half marathons.
5. Sarah’s NYC Marathon application was declined a few times before finally being accepted for the 2006 NYC Marathon. “From that day forward – the training and commitment began…? states Sarah.
6. Sarah and her family launched www.cysticfibrois.com over 10 years ago – a informative/educational/supportive site for people with CF and their families and therefore was committed to running the NYC Marathon for a cause related to cystic fibrosis.
7. Sarah finished the marathon in 6 hours and 20 minutes and is a winner spiritually, physically, and as a committed person in the game of life – CONGRAT’S!!!!
The Power of Two - a family story of twins Isabel and Anabel surviving with CF
Jerry Cahill interviews part time social worker, Isabel Stanzel Byrnes, who is 34 years old with CF post transplant 2.5 years (Isabel received the gift of life on February 6th 2004). Isabel has an identical twin sister, Anabel Stenzel, who also has CF and is post transplant 6 years.
Isabel grew up in Los Angeles, California
Diagnosed 3 days post birth
At age 5 started having a lot of respiratory infections
Isabel started having chronic pseudomonas at age 10
Attended Stanford University undergraduate school
Attended University of California, Berkeley graduate school
Isabel and Ana lived in Japan and taught English for a few years
Isabel has always been active in the area of exercise pre and post transplant and is an avid hiker.
Isabel has been married for 8 years to a wonderful man and support person, Andrew Byrnes.
"The transplant was a spiritual event" states Isabel.
"I survived with CF and the transplant due to all my exercise, I had a lot of muscle strength"states Isabel.
Isabel has competed in the United States Transplant Games that includes over 1800 athletes. Isabel won 1 gold and 2 silver medals!!
Isabel and Anabel have written a book: The Power of Two. A family story about twins surviving with cystic fibrosis.
For information on the book please contact Isabel at: isabear27@hotmail.com
Title: CF Roundtable gives back to
the cystic fibrosis community
CF Roundtable is a newsletter for
adults who have cystic fibrosis is published by United States Adult
Cystic Fibrosis Association, Inc. (USACFA). Roundtable, now known as
CF Roundtable, was founded in 1989 by an individual with CF, Lisa
McDonough. CF Roundtable is an educational newsletter.
Jerry Cahill interviews Board members
of USACFA; Paul Feld (49 with CF post transplant 19 months), Cynthia
Dunafon (42 with CF), Laura Tillman (58 with CF) and Kathy Russell
(62 with CF)
CF Roundtable/USACFA is a
independent, 501 c (3) tax exempt, non-profit organization whose
Board of Directors all have CF.
CF Roundtable is published
quarterly with over 1500 subscribers and available for $10.00/year.
The newsletter is over 40 pages with color pictures and 75% consists
of personal stories and a column by a medical professional
Dr. Joan DeCelie-Germana, director of the CF Center at Schneider Children’s
Hospital in New Hyde Park, New York, and assistant professor of pediatrics at
the Albert Einstein College of Medicine in the Bronx, New York discusses the
importance in maintaining a consistent daily treatment regimen to manage lung
disease.
· With the help of today’s CF lung therapies, CF patients are now living longer
and more active lives than ever before.
· Pulmonary treatments, especially the standard therapies, are critical to
helping CF patients stay as healthy as possible.
· For optimum health, it’s important to adhere to a doctor-recommended treatment
schedule each day, and to take the treatments in the right order.
· A recommended order of daily treatment for a CF patient is Bronchodialator,
Pulmozyme® (dornase alfa), The Vest or similar chest wall oscillator, and then
TOBI® (tobramycin solution for inhalation), but your doctor will recommend the
treatment schedule that’s right for you. Add-on therapies such as hypertonic
saline may be appropriate for certain patient populations.
· Getting regular physical exercise and following a nutritious, high-calorie
diet are also important for maintaining good health.
Title: Emily Schaller “Rocks CF? through rock & roll music…
1. Emily Schaller is 24 years old with cystic fibrosis and living in Detroit,
Michigan. Emily believes her goal in life is to “spread awareness? about cystic
fibrosis and is doing so in her rock and roll band. www.letsrockcf.org .Emily
was diagnosed at 18 months
2. “I attended CF camps when I was younger but they were shut down due to cross
contamination… so now people with CF go to cystic fibrosis chat rooms? states
Emily.
3. “Time management? is Emily’s biggest challenge due to all the therapy
compliance.
4. Emily is allergic to most medications therefore needs to be in hospital for
iv antibiotics vs. home care.
5. Emily’s passions include rock & roll and Broadway shows.
6. Activities such as drumming and jogging help keep Emily healthy.
7. Emily is a drummer in a rock & roll band called “HELLEN? and her brother
Jason is also in a band called “SOUTH NORMAL?.
8. Detroit Rocks CF is a group of 12 local bands that play music for a worldly
cause and have a benefit for CF called “Just Let Me Breath?
9. Let’s Rock CF music cd available at: www.letsrockcf.com.
10. “Keep going… stay active… play in a band or play sports… and live your life
to the fullest…? Emily’s advice to others with CF.
Schneider Children’s Hospital of North Shore LIJ Health Systems CF Nurses
Title:
CF Nurses “embrace patients and family? and form a “partnership?
Jerry Cahill interviews CF nurses, Lynn Bonitz and Susan Galvin, from Schneider
Children’s Hospital of North Shore LIJ Health Systems in New Hyde Park, New
York. Lynn and Susan have over 22 years of experience in nursing (12 in the
world of cystic fibrosis) and maintain a “positive attitude?.
Lynn and Susan are part of a phenomenal “TEAM? at the large CF Center at
Schneider Children’s of North Shore LIJ Health Systems that has over 200
pediatric patients and over 80 adult CF patients.
A typical day in the life of a CF nurse: “we spend ½ of the day seeing
patients in clinic followed by team meetings, phone triage, insurance issues,
clinical studies, and involvement in emergency cases? states Lynn and Susan.
“What I like most about the job is working with the patients and their
families? states Lynn
“The patients are always positive and very resilient? states Susan.
Challenges with infants: “the educational process for the family it is a
long-term process? states Lynn
Challenges with adolescents: “having patients take control of their care
and NOT abandoning care? states Susan.
Challenges with adults: “ Learning to maintain a balance in life?
Advice: Lynn and Susan both recommend that patients should have a case
manager at their insurance company. “Case managers can make things go very
smoothly?
Goal: “We strive to give the best care and help our patients in every way
we can and not treat them like medical records?
Title: Richie Keane recommendation to all people with CF: “Stay Clear?…
Jerry Cahill interviews Richie Keane who is 49 years old and “loving and
respecting life? Richie grew up in Long Island, NY and is one of 9 children (3
out of 9 have CF – one sister Valerie passed away and Jen Davison is doing well
and recently did a podcast)
- Richie grew up in Baldwin, NY.
- Diagnosed at birth “I was a purple baby?
- Richie was very active growing up playing football, baseball, and golf.
- “I started getting sick around 18 years of age and had pancreas surgery at age
30? states Richie.
- The biggest challenge Richie faces is that his breathing has gotten tougher,
the complications that develop from CF, and all the time involved doing
medications.
- Complications that Richie has experienced include: diabetes, pancreatitis, and
osteoporosis (broke over 30 ribs)
- Richie states: “living with CF is tough but I love life and CF has taught me
to respect life?
- Richie has been married for 18 years to his wonderful wife Maryanne – she is a
“special person? he states.
- Listed for a double lung transplant Richie’s dog “gets me off my butt? and
keeps him active prior to transplant.
- Richie’s advice: “keep your chin up, enjoy life, and take the time to get your
lungs moving to keep them clear?
Title: April Biggs “Keeps on Dancing? after Double Lung Transplant
April Biggs is 31 years old and received the gift of a double lung transplant on
August 15th 2004 at New York Presbyterian Hospital in New York City.
- April grew up in Jacksonville, Florida and was
diagnosed with cystic fibrosis at one years old.
- Growing up the doctors told her parents “Treat April
like a healthy person and to live as fully as she can?
- April started dancing at 5 years of age and is still
dancing and choreographing post transplant.
- April attended Florida State University.
- “CF causes a lot of alienation due to the fear of
catching germs from others with cystic fibrosis and that’s a drag? states April
- “People with CF have a strong will to live and usually
do pretty well getting through lung transplants? states April
- “My family is a GREAT support system? states April
- April’s FEV’s dropped from 85% to 30% and had a lot of
hemoptosis which expedited the need for a transplant.
- April’s recommendation to anyone with CF and anyone
facing a lung transplant: “exercise and if you can’t run, walk!? also… “live
your life to the fullest and do it!?
Title: CFRI (Cystic Fibrosis Research Inc.) A great organization!
CFRI is a very caring and committed organization to cystic fibrosis
- CFRI started 31 years ago by parents of children with CF to give support and raise money locally on the west coast for research and to make a difference for people living with CF.
- Carroll Jenkins, Executive Director, states: CFRI is a small group of 4 people and a few volunteers that wear many hats.
- CFRI address: 2672 Bayshore Parkway, Mountain View CA 94043
- Mission Statement: Cystic Fibrosis Research Inc. exists to fund research, to provide educational and personal support, and to spread awareness of cystic fibrosis, a life-threatening genetic disease.
- Carroll Jenkins states: We believe in the value of collaboration with other organizations for one cause, and each organization can build on each others strengths.
- CFRI does both educational and fundraising events
1.) 19th Annual Educational Conference: August 4th- 6th, 2006, a three day event for adults with CF, caregivers, researchers, health care providers, family members, as well as the non-research community. Focus for this year's seminar: THE CYSTIC FIBROSIS JOURNEY: ALL AGES, ALL STAGES
2.) Teen/Adult Day Retreat: August 6th - 11th 2006, for individuals with CF and their significant other. The goal is education, support, and fun
3.) 22nd Annual Golf Fundraising Tournament: August 7th 2006 @ Cinnabar Hills Golf Club, San Jose CA.
4.) Mother's Day Tea: May 14th 2006. Ã Warmest appeal to connect people and the largest avenue of fundraising for CFRI. You can get more info and donate at: cfri@cfri.org or call: 650-404-9981
Carroll Jenkins states: I am honored to work with CF. People with CF are amazing, not only do people with CF appreciate and value life, they appreciate the moment.
The Bonnie Strangio Education Scholarship was established in 2005 to honor the
memory of Bonnie Strangio. The scholarship will be awarded to a person living
with cystic fibrosis who, like Bonnie, has an upbeat personality and a "can-do"
attitude and shows a tremendous passion for life in achieving their goals
despite battling CF.
Bonnie loved life and everything in it. She appreciated family, friends, and
people in general. She always offered a patient ear to listen to friends. Bonnie
held a B.A. in Psychology and Masters in Teaching that took her down the career
path of a special education teacher in a New Jersey high school where she
focused on allowing learning disabled students to integrate in mainstream
society. Strong, brave, and giving, she never felt sorry for herself but strove
to make the best of everything. Everyone, young and old, loved her!
CRITERIA
An undergraduate or graduate student who has cystic fibrosis and whose service
and commitment to the prevention and cure of cystic fibrosis is exemplary.
SELECTION PROCESS
- Candidate will complete an application.
- Candidate will submit all necessary documentation including:
- Essay on post graduation goals.
- Recent photo.
- Letter from physician confirming CF diagnosis.
- Most recent W2 form verification for both parents.
- Transcript (high school, college, or graduate).
- Letter of acceptance from academic institution.
- The committee will choose finalists who will be interviewed thereafter.
- The award recipient will be chosen by a majority vote.
Jerry Cahill interviews Jennifer Davison who is 37 years old and living strong,
succeeding and NOT letting cystic fibrosis get in her way. Jennifer grew up in
Long Island, New York and is a registered nurse at Long Island Jewish/North
Shore Medical Center.
1. Jennifer is one of 9 children, 3 with CF.
2. Jennifer attended Fashion Institute of Technology (FIT) and after working in
the fashion industry decided to focus her career in the health field of nursing
3. Married to Tim and with a beautiful daughter – Dara – Jennifer “juggles 3
jobs - career, family, and health?
“I was treated NORMAL growing up – with a big family there was no time to
feeling sorry for yourself? states
4. Jennifer “we just got off our butt and lived?
5. Jennifer’s first hospitalization came at age 17 years old.
6. “Being active is the key to good quality of life – I ski, play racquetball
and ride my bike? states Jennifer.
7. Jennifer states: “CF is part of who I am but does not define me?
8. “CF does NOT stop me from living – I just get out there and LIVE?
9. Jennifer recommends that ALL people with CF should “get up at out and enjoy
life and do not put restrictions on yourself?
On March 11, 2006 the Boomer Esiason Foundation held it's 13th Annual Booming Celebration. The Booming Celebration is one of the largest single event cystic fibrosis fundraiser in the USA with over $3,000,000 raised to help fund CF research in one night. Congratulations to Steven M. Bowman 2006 Boomer Esiason Foundation Most Valuable Player.
Direct download: befv3.m4v
Category:podcasts
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Jerry Cahill, 49 with cystic fibrosis, discusses the importance of exercise and
explains the “gadgets? he uses while jogging.
1. “The single most important therapy in my life that keeps me healthy is
exercise? states Jerry
2. Jerry believes that being outdoors in the fresh air is much better than being
locked inside on a treadmill
3. “I try to exercise outdoors even when I am on IV antibiotics as it helps
clear out my congestion?
Jerry jogs with a small oxygen tank, prescribed by his doctor due to shortness
of breath. I use a “camelbak? backpack that is
normally used by bikers for hydration.
http://www.camelbak.com
4. “I believe in training smart so I use a Polar Heart Rate Monitor to time my
walking/jogging and keep track of my heart rate and exercise training zones.
http://www.polarusa.com
5. “When I exercise I need to wear an oximeter that measures the oxygen
saturation in your blood since my oxygen levels sometimes drop below 90%. The
oximeter (WristOx 3100) keeps me in check so I do not hurt myself and get the
full benefit of exercising my lungs, which are muscles and need to be worked?
http://www.nonin.com
6. “I have been exercising and jogging since I was 9 years old and it has
improved my quality of life living with CF. I believe everyone with CF can and
should do some form of exercise daily – even if you start with walking and build
up to jogging…?
Detroit Rocks CF is the first album put out by the Detroit run Rock CF
Foundation. The CD features twelve of Detroit's finest rock bands. Each band
donated one track to the album that will sell for $10. with all proceeds going
to the Cystic Fibrosis Foundation.
1. The album will officially be released at this years Just Let Me Breathe
benefit for Cystic Fibrosis.
2. This year's benefit show will be Friday, February 24th 2006 at the Royal Oak
Music Theatre in Royal Oak, Michigan.
3. The idea for Detroit Rocks CF was thought of by Emily Schaller, drummer for
the band Hellen.
4. Emily, 24, has cystic fibrosis, a genetic disorder that affects 30,000
Americans
5. Emily states: "The thought of bringing a dozen of the best Detroit bands
together on one CD all in the name of CF is amazing! It means so much to me that
the people of Detroit care and are willing to help such a great cause."
6. Visit www.letsrockcf.org for more information and to order a copy of the CD
Blubrry Jam Featuring Brother Love to raise funds for Boomer Esiason Foundation. Come Join the Fun!
Title: Cystic Fibrosis.com Celebrates 10 year Anniversary.
Title: RUN SARAH RUN!!!
Isabel Stenzel Byrnes Interview
On March 11, 2006 the Boomer Esiason Foundation held it's 13th Annual Booming Celebration. The Booming Celebration is one of the largest single event cystic fibrosis fundraiser in the USA with over $3,000,000 raised to help fund CF research in one night. Congratulations to Steven M. Bowman 2006 Boomer Esiason Foundation Most Valuable Player.
