54 Years Old and Living-Breathing Succeeding With Cystic Fibrosis
Episode #0098 Patient Airlift Services (PALS) – Giving Back to the CF Community with Eileen Minogue


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

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

-    PALS offers three missions:

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


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

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

-    PALS flight requirements:

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


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

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

-    Contact info:


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 -- posted at: 1:00pm EST

Episode #0097 Gunnar Esiason - College Life and CF

Gunnar Esiason, a 19-year-old with cystic fibrosis, is a sophomore majoring in English at Boston College. Gunnar is physically active in intramural sports, works at being compliant, and loves college life.

  • Gunnar was diagnosed with CF at the age of two. He had a normal childhood and played lacrosse, baseball, football and ice hockey. Gunnar, despite the usual frustrations, never lets CF get in his way from leading a normal life.
  • Gunnar feels very comfortable living with roommates in a dorm setting and sharing about cystic fibrosis. “Having roommates just adds to the whole college experience … I would not do it any other way,” he says.
  • “Going away to college has taught me to be more independent, and be responsible for doing my medications, airway clearance, getting enough rest, cooking and proper nutrition. I don’t want to get sick, so I have learned to take responsibility for my actions,” Gunnar says.
  • Gunnar values sleep and tries to get nine to 10 hours a night. His priorities are staying healthy, academics and socializing. Regarding socializing at college: “You have to make the right decisions and avoid people who smoke.”
  • Gunnar on telling people at college he has CF: “I am straight up with them and keep it simple – it’s a respiratory disease. Telling people I have CF helps them and myself grow – that is part of the college experience …”
  • Gunnar’s role models: “My parents and my sister Sydney [also attending BC]. They BELIEVE in me and are always telling me I can do it. My family is the best and they always push me to take care of myself.”
  • Gunnar’s advice to others thinking about going to college: “Do it – go to college and experience it! If you have the opportunity to go away to school – do it! Be independent and your own person – you will grow as a person.”
  • Gunnar on Gunnar: “I am a nice person, I enjoy living life to the fullest and I have no regrets … It’s all about going forward and not living in the past …”

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

Direct download: BEF_-_LBS_-_Gunnar_.m4v
Category:general -- posted at: 11:45am EST

Episode #0096 Eric Arthrell – Jumping into the Career World with CF

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.

Direct download: ericanthrell-careers.mp3
Category:podcasts -- posted at: 2:30pm EST

Episode #0095 Eric Arthrell Running NYC Marathon for Team Boomer Despite Having CF

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

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

  • Eric was diagnosed at birth with cystic fibrosis and staying active has helped maintain his health.
  • The ING New York City Marathon will be Eric’s first marathon.
  • “Exercise is the key to staying healthy with cystic fibrosis,” states Eric.
  • Eric’s goal for the marathon is 4 hours 30 minutes.
  • What Eric is looking forward to the most about the ING New York City Marathon: “Crossing the finish line.”
  • Eric’s fundraising page: http://www.firstgiving.com/ericarthrell
  • Team Boomer: http://esiason.org/teamboomer
Direct download: EricArthrell.mp3
Category:podcasts -- posted at: 2:55pm EST

Episode #0094 Bob Esparza – Being a CF Caregiver/Parent

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.

 

Direct download: RobertEsparza.mp3
Category:podcasts -- posted at: 10:00am EST

Episode #0093 Bryan Pendarvis – CF and Relationships

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.

Direct download: BryanPendarvis.MP3
Category:podcasts -- posted at: 10:00am EST

Episode #0092 Danny Ferrone - The Power of Exercise

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.

Direct download: DannyFerrone.mp3
Category:podcasts -- posted at: 4:12pm EST

Episode #0091 CFRI Teen & Adult Retreat: August 3rd – 9th 2010

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.
  • For more info on the retreat call 650-404-9975, email cfri@CFRI.org, or visit www.CFRI.org

 

Direct download: MaggieSheenanInterview.mp3
Category:podcasts -- posted at: 3:27pm EST

Episode #0090 Fundraising For A Cure

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!
Direct download: GwenShusterman.mp3
Category:podcasts -- posted at: 4:21pm EST

Episode #0089 Jerry Cahill - It's Not About CF

Jerry Cahill, 54 years old with cystic fibrosis, lives in Brooklyn, N.Y. Jerry is exercising with oxygen to keep his lungs clear, coaching and volunteering at the Boomer Esiason Foundation as he awaits a double-lung transplant. Jerry attacks the day and is living, breathing and succeeding with CF.

  • Jerry was diagnosed at age 10, and the doctors told his parents he would not make it to his 16th birthday.
  • “Growing up with CF is challenging, but you just have to push through ... it’s a discipline,” Jerry says.
  • Jerry loves being outdoors all year and exercises with a small oxygen tank, which helps him breathe better while he awaits a double-lung transplant.
  • “I believe in a complete program of being compliant to medications, good nutrition, exercise and a fun social life,” he says.
  • “Going out on disability is tough, but you just have to RE-INVENT yourself."
  • Jerry believes in “attacking the day and focus on living! I look forward to tomorrow and the next day, next week, and next year ...”


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

 

Direct download: Jerry10.m4v
Category:Vidcast -- posted at: 3:30pm EST

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