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Episode #0052 Kyle Connolly Interview

Title: Kyle Connolly Talks about being Compliant, Exercise, and College Life.


Kyle Connolly is a 21 year old college student that âstays clearâ? 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!

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• 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.
  
  
  
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  Episode #0047 Jerry Cahill's Exercise For Life Video (Windows Media Format)
  

  Title: Action speaks louder than wordsâ âEXERCISE FOR LIFEâ?
  
  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 âhere and nowâ?
  
  - âExercise is the single most important thing in my life that keeps me healthyâ? 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 âjogging/runningâ? on a daily basis.
  - Doctors and CF centers âtalk about itâ? but we need to get everyone with CF âdoing itâ? Your lungs are muscles and need to be worked to keep them clear and strong.
  - Besides being âcompliantâ? to medication and therapy routines â exercise should be part of EVERYONEâS 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 âoutsideâ? is key to oxygenating the lungs and keeping your airways clear.
  - âThe goal of exercise is to improve the quality of life and lifespan of individuals with CF through the power of daily physical activity

  
  
  
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  Episode #0047 Exercise For Life Video (iPod M4V Format)
  

  Title: Action speaks louder than wordsâ âEXERCISE FOR LIFEâ?
  
  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 âhere and nowâ?
  
  - âExercise is the single most important thing in my life that keeps me healthyâ? 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 âjogging/runningâ? on a daily basis.
  - Doctors and CF centers âtalk about itâ? but we need to get everyone with CF âdoing itâ? Your lungs are muscles and need to be worked to keep them clear and strong.
  - Besides being âcompliantâ? to medication and therapy routines â exercise should be part of EVERYONEâS 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 âoutsideâ? is key to oxygenating the lungs and keeping your airways clear.
  - âThe goal of exercise is to improve the quality of life and lifespan of individuals with CF through the power of daily physical activity

  
  
  
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  Episode 0046: New Challenges in Obtaining & Maintaining Health Insurance
  

  Beth Sufian Podcast Show notes

  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 âgolden nuggetsâ? of HIPAA

  • âKeep good recordsâ? suggests Beth

  • COBRA Insurance - Consolidated Omnibus Budget Reconciliation Act.

  • Beth gives pointers on Transitioning to Adulthood.

  • Beth also talks about Government Programs:

    • SSI â Supplemental Security Income

    • SSDI â Social Security Disability Income

    • Medicaid

    • Medicare

  • Beth Sufianâs clients include many people with CF. She is based out of Houston, Texas and travels nationally.

  
  
  
  With Every Breath
  

  Title: With Every Breath â stories about people living with cystic fibrosis.

  Katherine Russell is 16 years old with cystic fibrosis, from Buffalo, NY. Katherineâs book has a wide variety of writers from young, old, parents, patients, doctors, and friends. It demonstrates how the individual with CF as well as family and friends deal with CF.

  This book is very inspirational and educational for all involved in the world of cystic fibrosis.

  • Katherine is an outgoing young lady that swims on 2 teams, snowboarding, and loves socializing with her friends, music (cello) and writing.

  • Katherine attends high school and is a volunteer on the CF advisory panel at Childrenâs Hospital of Buffalo to help work towards better CF care.

  • âI want to travel to South Africa and Europe somedayâ? states Katherine.

  • In Katherineâs book With Every Breath, the stories range from recounts of having a child diagnosed with CF to being a patient receiving a transplant.

  • Some stories simply share advice and perspective, while others share stories of travel, success, understanding, and change.

  • For more information on the book contact Katherine Russell:
    www.lifewitheverybreath.com

  
  
  
  Give the Gift of Life
  

  Title: Give the Gift of Lifeâ
  
  A Plea to Encourage Organ Donors - Charlie Stockley, Priority Recipient on National Organ Donor List, in Immediate Need of Lung Donor and Transplant
  
  With most people focusing on getting through the holiday season, Charlie Stockley, 38, is fighting to get through another day waiting for a new set of lungs. Charlie is on life support and in immediate need of a lung transplant at Stanford Medical Center in Palo Alto. Charlie is up against his toughest battle with cystic fibrosis (CF). Although he is a priority lung transplant recipient on national organ donor watch lists, his condition remains tenuous as symptoms from CF complicate his recovery and threaten his life. Charlie has been on a life preserving ventilator since Tues, Dec 12, 2006, and a lung match has still not yet become available.

  • Charlie has been a tough fighter of this progressive, life-threatening lung disease, and has a lot to live for.

  • He met the love of his life 18 months ago, Margie Roper, and they are getting married on March 10, 2007. Charlie canât wait to make a new home with Margie, and her two children, Michael and Amber who he loves very much.

  • Charlie grew up in Livermore, CA and has resided in San Francisco for over 10 years.

  • He works as an audio designer at Electronic Arts and has been a professional drummer for numerous bands, including Mojo Deluxe and Mad Dog Toor.

  • Please visit www.CharlieStockley.com

  • For more information and updates: info@charliestockley.com

  
  December is the month of giving. We encourage everyone to make sure they are registered to show itâs important to them that others are given the opportunity to live a full and productive life. Charlieâs friends and family would greatly appreciate you getting the word out in anyway you can, as soon as you can.

  Here are a few things to do:
  1.  Take 3 minutes to sign up online to be a donor (by state). In California go to www.donatelifecalifornia.org. Other states, go to: www.donatelife.net
  2.  When you sign up online, notify friends and family via email
  3.  Tell your family members that you have decided to become a donor so they will understand your decision and support it.
  4.  Say yes to donation on your driverâs license
  5.  If tragedy should strike someone you know, please think of Charlie, and hundreds of people like him waiting for an organ, and encourage them to give the gift of life.
  
  Passing of Charlie Stockley
  From www.charliestockley.com
  Charlie Stockley passed away on the night of December 24th, 2006. We fervently believe that Charlie's courageous battle with Cystic Fibrosis has inspired countless people to register as the organ donors that someday might save the lives of others in his situation. Although Charlie didn't receive the lungs he so desperately needed, we know he would be happy if only one person was helped by his struggle. Charlie's family wishes to express their most sincere gratitude for the love, prayers and support that sustained them during their difficult ordeal and demonstrated how many lives were touched by this remarkable man. Please honor Charlie's memory either by registering as an organ donor or making a contribution to any chapter of the Cystic Fibrosis Foundation.
  
  Thanks to all who attended Charlie's Memorial Service & Life Celebration in Livermore on Saturday, January 6th, 2007. What a sincerely beautiful & glorious gathering! Thank you for the memories & memorabilia, all the music, the laughter & tears, your warm hearts & loving arms. A true testament to the power of one. You are invited to view photos from the celebration here.

  
  
  
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  Bonus Episode #0045: Sean Hunter Presents The Night Before Christmas
  
  
  To everyone who loves football, Christmas and children.

   

  A special podcast presentation of the classic Christmas story

  The Night Before Christmas

  has been added to the Boomer Esiason web site.
  
  www.esiason.org
  &
  
  Jerry Cahill's Cystic Fibrosis Podcast

   

  www.jerrycahill.com

   

  What we do want you to know is that it is OK to download this pod cast to your computer and to CDs without any cost or violation.  In fact, we encourage you to do so.  

  Christmas is a special time, and the hope is that you can help others enjoy sharing Christmas memories and traditions with their family, neighbors and friends. 

  So please,

  be part of the Christmas spirit, enjoy the special recording, 

  and pass the world along.

   

                                                          Always the best,

   

                                                                            Sean Hunter
  
  
  
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  Episode #0044 Cystic Fibrosis.com Celebrates 10 year Anniversary.
  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!!!!
  
  
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  Episode #0043 Rob Safuto's New York Minute Podcast - Mr. Dennehy's Party Coverage
  

  A big THANKS to Mr. Rob Safuto of the New York Minute Podcast

  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.

  Check out all of Rob's Podcasts

  http://www.podcastnyc.net (New York City Podcast Network)
  http://www.newyorkminuteshow.com (Podcast Guide to New York City)
  http://www.getyourflow.com (Flow is music...liberated!)
  http://community.podcastnyc.net (Join the community!)

  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.

  
  
  
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  Episode #0042 Sarah Katopodis Interview
  Title: RUN SARAH RUN!!!
  
  Sarah Katopodis ran her 1st Marathon in NYC and ran it for Team Boomer â Fighting Cystic Fibrosis, and we are honored!! Sarah raised over $4,000 for the Foundationâs 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 â Alex, Evan, and Steven. All were cheering Sarah on during the marathon.
  
  3.   âAs a child I used to run with my Grandfather at 6am during the summer at Long Beach Islandâ? states Sarah.
  
  4.   Sarah continued here passion for running with a running group while working in Charlotte, NC and ran 2 half marathons.
  
  5.   Sarahâs NYC Marathon application was declined a few times before finally being accepted for the 2006 NYC Marathon. âFrom that day forward â the training and commitment beganââ? states Sarah.
  
  6.   Sarah and her family launched www.cysticfibrois.com over 10 years ago â 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 â CONGRATâS!!!!
  
   8.   Check out Sarahâs award winning blog on her marathon experience at: http://blogs.cysticfibrosis.com/index.cfm?forumid=250
  
  Also check out cysticfibrosis.comâs website at: www.cysticfibrosis.com
  
  
  
  Joe Kelly Runs NYC Marathon for Team Boomer
  Donal Dennehy celebrates with Joe Kelly at Mr. Dennehyâs Pub located at 63 Carrmine Street in Greenwich Village NYC. The 1st Annual Post Marathon Party was a huge fundraising success for the Boomer Esiason Foundationâs Exercise for Life scholarship program for people with cystic fibrosis.
  
  1.   Joe Kelly runs his first marathon for Team Boomer â Fighting Cystic Fibrosis in under 4 hours
  
  2.   The Boomer Esiason Foundation presents Joe Kelly with an autographed football by Boomer Esiason for his great cause
  
  3.   Donal Dennehy accommodates the Boomer Esiason Foundation at his restaurant to help raise funds for people with CF
  
  4.   Donal is presented with a game ball for his commitment to the fight against cystic fibrosis
  
  5.   The event was a huge success raising over $5,000. for scholarships and a fun time was had by all.
  
  6.   Donal states âThis is the first of many fundraising events that Mr. Dennehyâs will partner up with the Boomer Esiason Foundation to raise money for a cure.
  
  For more information on Mr. Dennehyâs go to: www.mrdennehys.com
  
  
  MR. DENNEHYâS TO HOST TEAM BOOMER - FIGHTING CYSTIC FIBROSIS POST- NYC
  MR. DENNEHYâS TO HOST TEAM BOOMER - FIGHTING CYSTIC FIBROSIS POST- NYC MARATHON BENEFIT
  
  
  - On Sunday, November 5 from 7:00 PM to 9:00 PM, Mr. Dennehyâs located at 63 Carmine Street @ Seventh Avenue in New York Cityâs West Village will host a post-marathon celebration to benefit Team Boomer- Fighting Cystic Fibrosis.
  
  - The event is open to the public and ticket price is $25, which includes a two-hour open bar. All proceeds from the evening will go directly to the Boomer Esiason Foundation (BEF) to support the Exercise for Life Scholarship for individuals with cystic fibrosis.
  
  - Joe Kelly, an employee at Mr. Dennehyâs, will be representing TEAM BOOMER in the marathon along with many other international runners.
  
  - Team Boomer â Fighting Cystic Fibrosis was developed by BEF and is a USATF-registered competitive club.
  
  - Those who are a part of Team Boomer participate in various races, obtain sponsors, and donate the pledges they receive to BEF. Team Boomer is designed to promote exercise and help raise funds for the Exercise for Life scholarship program for people with CF.
  
  - BEF is a leader in the area of academic scholarships and transplant grants and is now being proactive as the frontrunner in the area of exercise for individuals with CF.
  
  - Mr. Dennehyâs, located at 63 Carmine Street at Seventh Avenue, is a traditional Irish pub and restaurant known for its live music, great food and charming bartenders.
  
  - Mr. Dennehyâs has received rave reviews from Time Out New York, New York Magazine and CitiSearch and is a New York pub thatâs not to miss.

  
  
  For more info:
  
  o Call: 212-414-1223
  
  o www.mrdennehys.com
  
  o donal@mrdennehys.com

  
  
  
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  Episode #0041: Isabel Stenzel-Byrnes Interview
  Isabel Stenzel Byrnes Interview
   
  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.
  
  
  1. Isabel grew up in Los Angeles, California
  2. Diagnosed 3 days post birth
  3. At age 5 started having a lot of respiratory infections
  4. Isabel started having chronic pseudomonas at age 10
  5. Attended Stanford University undergraduate school
  6. Attended University of California, Berkeley graduate school
  7. Isabel and Ana lived in Japan and taught English for a few years
  8. Isabel has always been active in the area of exercise pre and post transplant and is an avid hiker.
  9. Isabel has been married for 8 years to a wonderful man and support person, Andrew Byrnes.
  10. "The transplant was a spiritual event" states Isabel.
  11. "I survived with CF and the transplant due to all my exercise, I had a lot of muscle strength"states Isabel.
  12. Isabel has competed in the United States Transplant Games that includes over 1800 athletes. Isabel won 1 gold and 2 silver medals!!
  13. Isabel and Anabel have written a book: The Power of Two. A family story about twins surviving with cystic fibrosis.
  14. For information on the book please contact Isabel at: isabear27@hotmail.com

   

  
  
  
  CF Education Day comes to NYC
  Title: CF Education Day comes to NYC
  
  
  When: October 15th 2006 from 11am to 4pm
      
  Where: The Yale Club in New York City
  
  Info: cfday2006@aol.com
  
  Phone:  800-622-0385
  
  Come hear nationally recognized speakers at this one time event.
  The event is free and includes lunch
  Everyone must register to attend
  Speakers will discuss:
  o     ways to obtain health insurance and make it cover treatments needed to fight CF
  o    Laws that protect children with CF in school
  o    Strategies for living a successful life with CF
  o    New drugs on the CF Horizon
  o    Treatments and care of children and adults with CF
  
  Due to cross infection no one with CF can attend this event.
  To find out other ways adults with CF can participate in this event please contact: cfday2006@aol.com or call: 800-622-0385
  
  
  Running With Team Boomer
  

  TEAM BOOMER â FIGHTING CYSTIC FIBROSIS
  USA Track & Field Club #06-1114
  
  
  Millions of people worldwide are marathon runnersâ
  Millions of people worldwide jog, bike, swim, and exerciseâ
  Some people jog to stay in shapeâ
  People with cystic fibrosis jog to BREATHE!
  
  Because I have cystic fibrosis I want to prove that I can breathe.
  -Jerry Cahill/Age 50 Cystic Fibrosis Podcast

  
  
  Team Boomer â Fighting Cystic Fibrosis was developed by the Boomer Esiason Foundation (BEF) and is a USATF-registered competitive club. BEF is a leader in the area of academic scholarships and transplant grants and is now being proactive as the frontrunner in the area of exercise for individuals with cystic fibrosis (CF). Team Boomer is designed to promote exercise and help raise funds for the Exercise for Life scholarship program for people with CF, which helps them pursue their academic dreams.
  
  As an athlete, Boomer Esiason knows how important exercise is for improving health, especially for those with cystic fibrosis. Participating in sports and physical activity helps increase the quality of life and health, and teaches discipline. Like athletesâ dedication and daily regiments on the playing field, CF patients must be compliant to daily therapy and medication routines. Your lungs are muscles and need to be worked to keep them clear and strong â exercise should be part of EVERYONEâS daily routine. Team Boomerâs goal is to improve the quality of life and increase the lifespan of individuals with CF through the power of daily physical exercise.
  
  By sponsoring an athlete, you are helping the Boomer Esiason Foundation and Team Boomer raise money for the Exercise for Life Scholarship.

   

  Join Team Boomer Today

  Team Boomer Donor Sheet

  Team Boomer Pledge Sheet

  Team Boomer Sponsor Sheet

  
  
  
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  Episode #0040 CF Roundtable Gives Back to the Cystic Fibrosis Community
  

  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

  • Web site: www.cfroundtable.com or via phone: 503-669-3561

  • Topics include: Being a parent, transplant, parents of newly diagnosed, when to tell employers, and insurance issues â to name a fewâ

  • Board members comments on âwhy they do the newsletter?â?

  
  

  • Cynthia: âgive back to the CF Communityâ?

  • Paul: âoffer my life experiences post transplant and make a differenceâ?

  • Kathy: âfun and educationâ?

  • Laura: âcontribute to CF societyâ?

  
  
  
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  Episode #0039 Understanding CF Lung Therapies
  

  TITLE: Understanding CF Lung Therapies
  
  Dr. Joan DeCelie-Germana, director of the CF Center at Schneider Childrenâs 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.
  
  Â With the help of todayâs CF lung therapies, CF patients are now living longer and more active lives than ever before.
  Â Pulmonary treatments, especially the standard therapies, are critical to helping CF patients stay as healthy as possible.
  Â For optimum health, itâs 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 thatâs right for you. Add-on therapies such as hypertonic saline may be appropriate for certain patient populations.
  Â Getting regular physical exercise and following a nutritious, high-calorie diet are also important for maintaining good health.

  
  
  
  CFRI TEEN & ADULT DAY RETREAT
  

   

  

  Title: CFRI TEEN & ADULT DAY RETREAT
  
  The CFRI Retreat is August 6th and 11th in Menlo Park, California for teens, 15-18 years and adults with cystic fibrosis, their family members and health care providers. The event is fun, educational and a safe environment to meet some great friends!
  
  
  The retreat provides a safe and welcoming environment aimed at enhancing positive coping skills, social support and education for people who share common experiences with CF.
  
  Activities include daily exercise, arts & crafts, rap sessions, and educational workshops with guest speakers.
  
  Cost is $65  per person for entire week.
  
  Scholarships available.
  
  Safety is a top priority: ALL people with CF are required to comply with cross infection behavioral precautions. A medical advisor is available at all times, and volunteers are available to assist with respiratory treatments.
  
  For more info: http://www.cfri.org/home2.html

  
  
  
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  Episode #0038 Emily Schaller Interview
  

  Title: Emily Schaller âRocks CFâ? through rock & roll musicâ

  
  1. Emily Schaller is 24 years old with cystic fibrosis and living in Detroit, Michigan. Emily believes her goal in life is to âspread awarenessâ? about cystic fibrosis and is doing so in her rock and roll band. www.letsrockcf.org .Emily was diagnosed at 18 months
  2. âI attended CF camps when I was younger but they were shut down due to cross contaminationâ so now people with CF go to cystic fibrosis chat roomsâ? states Emily.
  3. âTime managementâ? is Emilyâs 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. Emilyâs 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 âHELLENâ? and her brother Jason is also in a band called âSOUTH NORMALâ?.
  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 âJust Let Me Breathâ?
  9. Letâs Rock CF music cd available at: www.letsrockcf.com.
  10. âKeep goingâ stay activeâ play in a band or play sportsâ and live your life to the fullestââ? Emilyâs advice to others with CF.

  
  
  
  Living - Breathing - Proof
  

   

  

  Living Breathing Proof

  Celebrating my 50th Birthday !

  Remember - Compliance, Nutrition, Exercise and Determination are the keys to having  a great quality of life with cystic fibrosis

  
  
  
  Exercise For Life CF Athletic Scholarship
  

  

  Exercise For Life CF Athletic Scholarship

  Presented by the Boomer Esiason Foundation

  Details Coming Soon!

  
  
  
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  Episode #0037: Schneider Children's Hospital of North Shore LIJ Health Systems CF Nurses
  

  Schneider Childrenâs Hospital of North Shore LIJ Health Systems CF Nurses
  
  Title:
  
  CF Nurses âembrace patients and familyâ? and form a âpartnershipâ?
  
  Jerry Cahill interviews CF nurses, Lynn Bonitz and Susan Galvin, from Schneider Childrenâs 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 âpositive attitudeâ?.

  • Lynn and Susan are part of a phenomenal âTEAMâ? at the large CF Center at Schneider Childrenâs 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: âwe spend  of the day seeing patients in clinic followed by team meetings, phone triage, insurance issues, clinical studies, and involvement in emergency casesâ? states Lynn and Susan.
  • âWhat I like most about the job is working with the patients and their familiesâ? states Lynn
  • âThe patients are always positive and very resilientâ? states Susan.
  • Challenges with infants: âthe educational process for the family it is a long-term processâ? states Lynn
  • Challenges with adolescents: âhaving patients take control of their care and NOT abandoning careâ? states Susan.
  • Challenges with adults: â Learning to maintain a balance in lifeâ?
  • Advice: Lynn and Susan both recommend that patients should have a case manager at their insurance company. âCase managers can make things go very smoothlyâ?
  • Goal: âWe strive to give the best care and help our patients in every way we can and not treat them like medical recordsâ?
    
    
    
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    Episode 0036: Richie Keane Interview
    

    Title: Richie Keane recommendation to all people with CF: âStay Clearâ?â
    
    Jerry Cahill interviews Richie Keane who is 49 years old and âloving and respecting lifeâ? Richie grew up in Long Island, NY and is one of 9 children (3 out of 9 have CF â 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 âI was a purple babyâ?
    - Richie was very active growing up playing football, baseball, and golf.
    - âI started getting sick around 18 years of age and had pancreas surgery at age 30â? 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: âliving with CF is tough but I love life and CF has taught me to respect lifeâ?
    - Richie has been married for 18 years to his wonderful wife Maryanne â she is a âspecial personâ? he states.
    - Listed for a double lung transplant Richieâs dog âgets me off my buttâ? and keeps him active prior to transplant.
    - Richieâs advice: âkeep your chin up, enjoy life, and take the time to get your lungs moving to keep them clearâ?

    
    
    
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    Episode #0035: April Biggs Keeps on Dancing after Double Lung Transplant
    

    Title: April Biggs âKeeps on Dancingâ? 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 âTreat April like a healthy person and to live as fully as she canâ?
    
    -     April started dancing at 5 years of age and is still dancing and choreographing post transplant.
    
    -     April attended Florida State University.
    
    -     âCF causes a lot of alienation due to the fear of catching germs from others with cystic fibrosis and thatâs a dragâ? states April
    
    -     âPeople with CF have a strong will to live and usually do pretty well getting through lung transplantsâ? states April
    
    -     âMy family is a GREAT support systemâ? states April
    
    -     Aprilâs FEVâs dropped from 85% to 30% and had a lot of hemoptosis which expedited the need for a transplant.
    
    -     Aprilâs recommendation to anyone with CF and anyone facing a lung transplant: âexercise and if you canât run, walk!â? alsoâ âlive your life to the fullest and do it!â?

    
    
    
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    Episode #0034: CFRI - Cystic Fibrosis Research Inc.
    

    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

    - Phone: 650-404-9975

    - http://www.cfri.org

    - cfri@cfri.org

     

    - 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.) 19^th Annual Educational Conference: August 4^th- 6^th,  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 6^th - 11^th 2006, for individuals with CF and their significant other. The goal is education, support, and fun

    3.) 22^nd Annual Golf Fundraising Tournament: August 7^th 2006 @ Cinnabar Hills Golf Club, San Jose CA.

    4.) Mother's Day Tea: May 14^th 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.

    
    
    
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    Episode #0033 Bonnie Strangio Educational Scholarship
    

    Bonnie Strangio $2500 Education Scholarship
    
    

    Application Deadline: June 30, 2006
    
    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.
    
    
    SELECTION TIME PARAMETERS
    Fall term
    
    APPLICATION
    Available at the Boomer Esiason Foundation web site: http://www.esiason.org
    
    Available at: http://www.cfscholarships.com/bonnie_strangio_scholarship.html
    
    
    CONTACT
    
    Boomer Esiason Foundation
    c/o Jerry Cahill
    417 Fifth Avenue, 2nd Floor
    New York, NY 10016
    Phone: 646-344-3661
    Fax: 646-344-3757
    
    EMAIL QUESTIONS TO: jcahill@esiason.org

    
    
    
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    Episode 0032: Jennifer Davison Interview
    

    NO LIMITS!!!!
    
    
    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 â Dara â Jennifer âjuggles 3 jobs - career, family, and healthâ?
    âI was treated NORMAL growing up â with a big family there was no time to feeling sorry for yourselfâ? states
    4. Jennifer âwe just got off our butt and livedâ?
    5. Jenniferâs first hospitalization came at age 17 years old.
    6. âBeing active is the key to good quality of life â I ski, play racquetball and ride my bikeâ? states Jennifer.
    7. Jennifer states: âCF is part of who I am but does not define meâ?
    8. âCF does NOT stop me from living â I just get out there and LIVEâ?
    9. Jennifer recommends that ALL people with CF should âget up at out and enjoy life and do not put restrictions on yourselfâ?

    
    
    
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    Episode 0031: 2006 Boomer Esiason Foundation Booming Celebration
    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.
    
    
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    Episode #0030: 2005 Sacks For CF Scholarship Winners
    

    Sacks for CF Scholarship Program 2005 Winners

    Sacks for CF will award scholarships to the following 15 people with CF who are striving for therapy adherence and academic success.

     

     

    
     

    Name	City	College
    John Anthony	Erie, PA	Mercyhurst College
    Bailey Broadbent	Canton, OH	Kent State
    April Christensen	Parker, SD	University of Nebraska
    Keith Connolly	Cincinnati, OH	Xavier University
    Jessica Coulter	Winston-Salem, NC	Salem College
    Nicole Ellis	Islamorada, FL	Stetson University
    Phillip Fett	Dripping Springs, TX	Saint Edward's University
    Michelle Green	Medina, OH	Ohio State University
    Philip Griffin	Pottsville, PA	Embry Riddle Aeronautical
    Erin Keitges	Allen, NE	Morningside College
    John Meadows	Pickerington, OH	University of Cincinnati