Title: Bryan Pendarvis – CF and Relationships

Bryan Pendarvis, 21 years old with cystic fibrosis, from Louisiana, starting his senior year at

Southeastern University 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 “, states Bryan. Bryan enjoys all sports especially:

baseball, softball, jogging, and weight lifting.
-    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” states Bryan.
-    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…” states Bryan.
-    Bryan wants to be treated normal and does not want someone he is dating to fee pity

for him just understand…
-    Relationships that have made a major impact in Bryan’s life are his mother and older

brother Shaun (passed away from CF a little over a year ago).  “My mom is always there for me

and helps me overcome obstacles… and 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 and unrestricted educational grant from Genentech to The Boomer

Esiason Foundation.

 

 

Title: Danny Ferrone – The Power of Exercise & CF

Danny Ferrone, 26 years old with cystic fibrosis, living in Illinois and competing in triathlons. Danny is going to school to be a fitness instructor, founder of Fight Forever Foundation in 2006(www.fightforever.org), and living, breathing, succeeding with CF.

-    Danny grew up playing baseball, soccer, football, BMX biking, and basketball. “My parents believed in keeping me active”, states Danny.

-    “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”, states Danny.

-    Danny likes variety in exercise training so also added swimming, yoga, and boxing (mixed martial arts) to his training routine. Danny has competed in 4 marathons (best time 4hours 18minutes) and 4 triathlons, including a Half Ironman.

-    The biggest 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”, states Danny.

-    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 and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Title: 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” on 10 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 1990’s. Maggie has been attending for the retreat for 5 years and scholarships are available

-    “Activities at retreat include; rap sessions, arts & crafts, sporting events, fun in the sun, and great food!” states Maggie.

-    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” states Maggie.

-    Maggie continues to return to the retreat because of the great friends she makes and the awesome connection to the CF community.

-    Maggie feels refreshed at the end of the retreat.

-    For more info on the retreat call: 650-404-9975

-    Email: cfri@CFRI.org

-    Website: www.CFRI.org

Title: 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,” states Gwen.

-    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” states Gwen.

-    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” states Gwen.

-    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” states Gwen

-    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!” states Gwen.

-    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!

Title: Episode #0088 Walks on the Beach With Angie: A Father’s Story of Love by Don Warner

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 3 months of age and recalls how alarming & frightening the information on CF was at the library.

-    “Angie was an active child and a normal high school kid very involved in cheerleading,” states Don.

-    During the final 86 days of her life, as Angie lay in the intensive care unit on a ventilator, the Warner’s were surrounded by love ones. The grief and loss that Don and his wife experience prompted him to write the 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 everyday”.

-    Don Warner’s recommendations to others that 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 & hope that you will re-unite someday”.

-    For more information go to: www.angelawarnerfoundation.org

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

Title: Episode #0087 Dan Palumbo – Gearing Up for Disability with CF

Dan Palumbo, 53 years old with cystic fibrosis, grew up in Wilkes-Barre, Pennsylvania, married and the proud father of twins that are both in law school. Dan has his own advertising agency but due to the progression of CF is considering disability so he can spend more time taking care of his health. Dan, at age 53, is living, breathing, succeeding with CF.

-    Dan was diagnosed at 1month of age in Wilkes-Barre, PA.

-    Graduated college with a degree in communications and advertising, Dan 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”, states Dan.

-    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 maybe my only choice if I want to stay alive and watch my son and daughter start a family – I want to be a grandfather”, states Dan Palumbo.

-    Dan’s biggest fear about disability is the loss of a lot of his business relationships/friends but feels his health is more important at this point in time.

-    “I am a published song writer 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”, states Dan.


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

Title: Travis Flores – Giving Back to the CF Community
Travis Flores, 18 years old with cystic fibrosis, grew up in Ohio and is currently attending college in New York City. Besides going to school Travis wrote a children’s book, has 2 websites that are raising awareness and funds for cystic fibrosis, a Heroes of Hope recipient, and Travis is living, breathing, 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 8 years old. (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,” states Travis.

-    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 series is the 8th in a series of 12 made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Episode #0085 Casey Flaherty – Nutrition and CF

Casey Flaherty, 25 years old with cystic fibrosis, living in New York City and running the ING New York City Marathon. Casey 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 & protein,

-    “Besides being adherent to my treatments I believe in good nutrition, exercise, and rest. I try to get 8 hours of sleep every night” states Casey.

-    Casey loves junk foods like baked goods and pizza but 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” states Casey.

-    Casey’s little secret on nutrition and CF is that she eats a lot of peanut butter and cheese as a snack because if it’s nutritional value.

-    “CF is part of my life and I just deal with it… everyone has something” states Casey.

-    Casey’s recommendations to others with CF, “Be adherent to your medications, have 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 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 #0083 Kevin McCrea – Exercise for Clear Lungs

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

-    Kevin was diagnosed 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 & field (4 years), basketball (2 years), and football (1 year). Sports was a social event and has made a major impact on my health” states Kevin.

-    Kevin’s training in basketball and track & field was 2 hours 6 days/week and the running and jumping makes 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 that 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”, believes Kevin.

-    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”, Patrick’s advice to others with CF thinking about college.

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

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

Philip Stevanovic, 36 years old with cystic fibrosis and diabetes, living in New York, 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 2 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, Middle East, and Yugoslavia,” states Phil.
-    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,” according to Phil.
-    “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,” states Phil.
-    “Since I started insulin treatment for my CFRD I have gained weight, which is something I could never do with CF,” states Phil.
-    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 other 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 and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Title: Patrick Newman – Gearing Up for College with CF

Patrick Newman, 18 years old with cystic fibrosis, living in Missouri. Patrick is playing sports, enjoying friends and family, and gearing up for college.  Attending University of Missouri in the fall, Patrick 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”, states Patrick.
-    “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 ”, states Patrick.
-    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”, states Patrick.
-    The biggest challenge that 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!”
-    “Step it up! Get out there and live and do not alienate yourself”, Patrick’s advice to others with CF thinking about college.

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

Title: Victor Roggli – Succeeding in the Career World with CF
Victor Roggli, 58 years old with cystic fibrosis, living in North Carolina, married with a family, and working 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 SUCCEEDING with CF, the career world, and life!
-    Victor was born in Winchester, Tennessee on a farm and 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” states Victor.
-    Victor attended Rice University where he majored in Bio Chemistry and then attended medical school at Baylor in Houston, Texas.
-    “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…” states Victor.
-    Victor now believes in being open about his CF and does his aerosol therapies at work. “With the American Disabilities Act people cannot discriminate”
-    “Know your limitations with CF and be realistic in what you do in the career world,” states Victor.
-    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 adopt to CF, let it adopt to you…”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 2nd in a series of 12 made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Title: Chad Brown Believes in Laps for Life with Cystic Fibrosis

Chad Brown, 27 years old with cystic fibrosis, living in Seattle Washington, took his FEV1’s from 29% to 58% through the power of swimming. Chad 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, is LIVING BREATHING SUCCEEDING LIVING on a daily basis.

- Chad was born in Tennessee and 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,” states Chad.

- Insurance issues forced Chad to move to the state of Washington. “Washington has a user friendly state insurance program for people like myself 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!” states Chad.

- Chad is pursuing a college degree in engineering, working over 30 hours a week to support himself, involved in a great relationship and looking forward to marriage and starting a family. “Life is good…”

- 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 and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Title: Chad Brown Believes in Laps for Life with Cystic Fibrosis

Chad Brown, 27 years old with cystic fibrosis, living in Seattle Washington, took his FEV1’s from 29% to 58% through the power of swimming. Chad 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, is LIVING BREATHING SUCCEEDING LIVING on a daily basis.

- Chad was born in Tennessee and 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,” states Chad.

- Insurance issues forced Chad to move to the state of Washington. “Washington has a user friendly state insurance program for people like myself 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!” states Chad.

- Chad is pursuing a college degree in engineering, working over 30 hours a week to support himself, involved in a great relationship and looking forward to marriage and starting a family. “Life is good…”

- 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 and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Title: Episode #0078 CF Travel Tips - Isabel Stenzel Byrnes

Isabel Stenzel Byrnes, 37 years old with cystic fibrosis living in Northern California, a wanderlust, and post transplant 5 years, and co-author with her sister Anabel of the book The Power of Two (www.stenzeltwins.com). Isabel has worked as a social worker and health educator and is LIVING BREATHING SUCCEEDING on a daily basis.
Isabel, along with her twin sister Anabel and family, has traveled the world visiting 12 foreign countries and 41 states in the USA. Isabel started traveling at age 8 and has also 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 college from the 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 hands a lot, drink lots of water, and ALWAYS carry-on my medications” states Isabel.
- Post transplant Isabel continues to travel and has added a mask during airplane travel.
- “I have lived a very privileged life and CF had taught me to be very disciplined and everyone with CF is a mentor to me,” states Isabel.
- Isabel’s advice; “Do not limit yourself and allow yourself to dream…”

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

Title: Episode #0077 Julie Desch - Nutrition and CF
Julie Desch, 48 years old with cystic fibrosis living in Northern California, single mom with 2 fabulous children and works from home running a non-profit – New Day Wellness (www.newdaywell.org), and LIVING BREATHING SUCCEEDING LIVING on a daily basis…

Julie has realized the benefits of nutrition and exercise and at New Day Wellness Julie coach’s nutrition, fitness, stress management, and disease management to people with chronic illness – many with CF.
- Julie was born in Nebraska, diagnosed at birth; the youngest of 7 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”, states Julie.
- Julie’s “junk” foods include; pretzels, yogurt, frosted mini wheat’s 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”, states Julie.
- 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…” states Julie
- Gaining weight… “Get involved in exercise and especially weight training and eat a lot”, believes Julie
- Julie’s advice to others… “hope… and be compliant and aggressive to keep your lungs clear”

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

Title: Episode #0076 Paul Drury - Giving Back to the CF Community
Paul Drury, 42 years old with cystic fibrosis, happily married, working for the Cystic Fibrosis Foundation (Connecticut Chapter), a mentor to the CF community, post lung and kidney transplant, and LIVING BREATHING SUCCEEDING LIVING 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 fundraising and speaking to many people with CF on a daily basis.

- Paul was born in Chicago, diagnosed at age 2 due to “failure to thrive”, grew up in Connecticut, attended the University of Connecticut, and is one of six children.
- “Growing up with CF was a very private matter and I jumped in to the world of CF post transplant”, states Paul.
- Paul believes; “Working for the Cystic Fibrosis Foundation let’s me give back to others and have a major impact on their life by giving them HOPE... and it makes me feel good”.
- Paul gives back at the CFF by doing fundraising for a cure, speaking at events to raise awareness, speaks to families and patients on a daily basis; “ I am like the poster adult for the CF community”, states Paul.
- Paul is also 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 med.’s, exercise, nutrition, and sometimes laughter is the best medicine”.

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

Title: Episode #0075 Living with CF is All about Teamwork

Gunnar Esiason, 17 years old with cystic fibrosis (CF), high school senior, 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 2 and resides in Long Island with his family.
- “CF has obviously shaped my life but does not get in the way of me being a normal teenager,” states Gunnar.
- Gunnar, like being on a football team, 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,” states Gunnar.
- “Besides my medical team, my family and friends are also a big part of my team and the more they know about me the better they can help and I can win the battle with CF,” states Gunnar.
- 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.

Title: Episode #0074 Pre-Transplant – Gearing Up for New Beginnings…
Jerry Cahill, 52 years old, Living Breathing Succeeding with cystic fibrosis 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. Attended the University of Connecticut, competed in track & field specializing in the pole vault, worked in the apparel industry for 26 years, coach’s track & field, and currently 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…” states Jerry
- “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…” Jerry believes.
- Jerry believes that 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 & friends, FUNDRAISE, and gear up for NEW BEGINNINGS as the best is yet to come…”

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

Title: Episode #0073 Better Living Through Nutrition – Power Up the Body
Gunnar Esiason, 17 years old with cystic fibrosis (CF), high school senior, actively involved in sports, being compliant, and gearing up for college
- Gunnar was diagnosed at age 2 and resides in Long Island with his family.
- “CF has obviously shaped my life but I am fortunate to have a great family and friends” states Gunnar.
- Gunnar loves to eat and 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 stomach aches and that is very uncomfortable” states Gunnar.
- Gunnar keeps his enzymes in a pillbox and always carries them in his pocket or backpack.
- “I usually try and have 4 meals a day and snacks between meals and make sure that I have a lot of OPTIONS with my food choices. I also make milkshakes to get extra calories”. States Gunnar
- Gunnar’s advice to others with CF on nutrition… “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” states Gunnar.

This podcast was made possible through and 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.

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.

Title: Cystic Fibrosis and Starting a Family

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.
   

Title: Relationships and CF – Episode #0063 Tiffany Christensen Speaks Out!

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!?
•  www.sickgirlspeaks.com
  
  * 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
• Check out Scott’s photo’s and video at: www.myspace.com/slowesttriathlete
• “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.

“Making Fun Contagious?…

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.
  
  For more info: www.thebigfunbox.org or call: 904-730-0956

Title: Adult Cystic Fibrosis Day


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: Adult Cystic Fibrosis Day


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

Title: Brian’s Ride

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

 

GOOD LUCK BRIAN!

Blubrry Jam Featuring Brother Love to raise funds for Boomer Esiason Foundation.  Come Join the Fun!

Date
Saturday, Apr 7, 2007

Time
7:00 pm - 11:00 pm

Location
Canal Room
285 W. Broadway
New York, NY 10013 Date: April 7th
Location: Canal Room
New York, NY

Price: $18 Online
http://blubrryjam.eventbrite.com/

$20 at the Door

I hope to see you at the Canal Room

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 19^th 9am

  • Rye Playland, Rye, NY on Sunday, May 20^th 9am

  • Clove Lakes Park, Staten Island, NY on Saturday, June 2^nd 9am

  • Bowdoin Park, Poughkeepsie, NY on Sunday, June 3^rd 9am

• More information on CF Great Strides nationally is available at: www.cff.org/great_strides

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

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 “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!!!!

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.

Title: RUN SARAH RUN!!!

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!!!!

 8.   Check out Sarah’s award winning blog on her marathon experience at: http://blogs.cysticfibrosis.com/index.cfm?forumid=250

Also check out cysticfibrosis.com’s website at: www.cysticfibrosis.com

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

 

TITLE: Understanding CF Lung Therapies

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

- 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.

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

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 – 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.

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.

 

 

 

Sacks for CF is a scholarship program funded by CHIRON CORP. the makers of TOBI for inhalation.

Congratulations on a job well done!!!

 

 

TITLE: Exercise for Life

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 Cystic Fibrosis !

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

Title: Reardon Runs With CF – Not From It!

Jerry Cahill interviews Charlotte Reardon and states “ I enjoyed meeting Charlotte – she is a selfless young woman that is full of passion and hope?

Charlotte is 20 years old with cystic fibrosis and is Living, Breathing and Running to stay healthy. Currently attending the University of Rochester in Rochester, NY and studying psychology in Austria for the spring semester.

1.    Charlotte grew up in Olney, Maryland and was diagnosed at 2 weeks of age and has 3 sisters.
2.    In the hospital a lot for iv antibiotic therapy during grade school, Charlotte also had a feeding tube inserted in 7th     grade.
3.    After some of her CF clinic friends died – Charlotte decided to “take control of her disease?
4.    “Exercise is my main form of therapy? states Charlotte.
5.    Ms. Reardon attributes her success to her father, John Reardon, who first pushed her into running.
6.    “In all honesty I’m kind of in denial,? states Charlotte. “I like to think of myself as someone who’s healthy. I have CF, but at the same time I am determined to do anything I want to do?
7.    “CF is a cross in life but it made me tough!? states Charlotte.
8.    Charlotte believes “Doctors need to stress exercise to their CF patients and everyone with CF needs to get out there and do something?
9.    ‘Breathing [while running] is harder for me than it is for other people, Reardon said. But the more running I do, the easier I can breathe and the better I feel.?
10.    Charlotte’s advice to others with CF “Don’t let it stop you – just get out there and live!?

Sacks for CF Scholarship Program 

• Sacks for CF is a scholarship program funded by CHIRON CORP. – the manufacturers of TOBI® for inhalation.
• Jerry states: “TOBI® has made a major impact on treating respiratory infections and has given me a better quality of life?
• CHIRON CORP has given a charitable grant of over $170,000. To the Boomer Esiason Foundation Grant Program.
• Sacks for CF will award 15 scholarships to people with CF who strive for therapy adherence and academic success.
• Scholarship details and applications are available at: www.sacksforcf.com

More information is available by visiting the Boomer Esiason web site: www.esiason.org
Deadline for ALL applications: Friday, February 24th 2006
Winners announced: Friday, March 10th 2006

Alison Cain Podcast


Title:
Allison Cain can finally breathe after transplant and no more “CF boot camp?


Jerry Cahill interviews Alison Cain who is 34 years old and had a double lung transplant at New York Presbyterian Hospital in NYC 1 ½ years ago due to progression of cystic fibrosis. Alison grew up in Connecticut and has returned to work teaching high school Spanish.

- Alison was diagnosed at 1 ½ years of age due to a “strange cough? and “failure to thrive?
- Alison attended Fordham University in New York.
- Sports kept Alison healthy for a long time prior to transplant: “I was a competitive swimmer from age 4 to 13 years of age. I also played soccer, softball, and ran cross country track?
- Alison was never hospitalized for cystic fibrosis until the age of 19.
- At age 28 Alison developed CF related diabetes.
- June 16, 2004 Alison had a double lung transplant that lasted 6 hours and was hospitalized for 10 days.
- Alison believes, after many years of battling CF, that a transplant is the only true cure for CF and that her life is so much happier now.
- Alison’s advice: “Be compliant to therapy/med.’s and don’t give up hope.

Laurie McDonald Podcast


Title:
Laurie McDonald, Social Worker at UNC Transplant Center Makes a Difference


Jerry Cahill interviews Laurie McDonald, Transplant Social Worker at UNC Medical Center in Chapel Hill, North Carolina. Laurie works closely with the medical team, patient, and family to make sure everything runs smoothly with the transplant.

• Laurie is involved in lung, heart, liver, and kidney transplant social work.
• Cystic Fibrosis disease progression is the reason for over 50% of lung transplants at UNC.
• “Financial issues as well as re-locating and waiting for the transplant are the biggest challenges for patient and family? states Laurie
• UNC Transplant Center offers support groups to patients and family that is both educational and good forum for stress release.
• Laurie recommends setting up a “fundraising team? ASAP once you are listed to help ease the financial burden of unexpected expenses.
• Laurie’s advice:
  1. “Live everyday /minute of your life and don’t count on transplant to turn your life around?
  2. “Prepare Financially?
  3. “Exercise – the surgery and recovery will go smoother?

  
  
  
   

Al Iannello Gives the “Gift of Breath? this Holiday Season

Jerry Cahill interviews Al Iannello.

Al is 41 years old with cystic fibrosis and another adult “living, breathing, and succeeding with CF. Al Iannello recently donated a therapy vest to another individual in need with CF.

* Al Iannello was diagnosed at birth after he “died at birth?
* Al has 1 brother and 2 sisters and his older sister also has CF and is 48 years old
* Growing up Al was very involved in baseball, football, and basketball.
* Al states: “ I just deal with my condition and live a normal life?
* “I come from a very close family and they ALWAYS are by my side?
* Al is always positive and a fighter - “having CF is not the end of the world?
* “Don’t live in the North Pole and be isolated, you should be part of and get involved in the community? states Al Iannello.
* Al’s recommendation: “Do what you have to do to stay healthy and move forward in life!?

Scott Johnson: The Tri-Athlete (swim, bike, run)



Jerry Cahill interviews Scott Johnson about training for an “Ironman? Triathlon

Scott Johnson at age 33 has been living with CF, living 4 years out with a double lung transplant, and now living with the accomplishment of competing in over 18 triathlons.

Scott recently competed in the FLORIDA IRONMAN – the most elite of triathlon competitions – on November 5th in Panama City, Florida.

• IRONMAN Triathlon consists of swimming 2.4 miles, biking 112 miles, and finishing with a 26.2 mile run
• Scott states: “Prior to my transplant, I made a list of things I’d like to accomplish and a triathlon was one of my wishes?
• “One year after my double lung transplant I started training hard?
• Scott is sponsored by the Wilmington YMCA
• Scott trains 6 days a week for a total of 30 hours.
• Additional nutritional supplements include pre-natal vitamins and protein shakes.
• “Life is precious and I am living it to the fullest? states Scott

Scott Johnson: The Double Lung Transplant (Part II)


Jerry Cahill interviews Scott Johnson about his double lung transplant


Scott Johnson is 33 years old with cystic fibrosis and had a double lung transplant 4 years ago on September 15th 2001 at University North Carolina Medical Center in Chapel Hill, North Carolina.

• Scott grew up in Jacksonville, North Carolina
• At 27 years old with a sinus infection Scott’s lung x-rays looked like a “blizzard?
• Scott was listed for 2 years, the surgery was 9 hours, and he was hospitalized for 17 days.
• Scott prepared for the transplant by exercising on a treadmill and weights and going to support groups.
• “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?.
• Scott words of encouragement for others listed for a transplant: “Maintain a positive outlook and keep exercising!?

  
   

Scott Johnson: Growing up with CF (part 1)


Jerry Cahill interviews Scott Johnson in 3 parts:
1. Growing up with CF
2. The Double Lung Transplant
3. The Triathlete


Scott Johnson is 33 years old with cystic fibrosis and training hard in sports regardless of the fact that he has CF and underwent a double lung transplant 4 years ago at UNC Chapel Hill, North Carolina.

• Scott grew up in Jacksonville, North Carolina
• Diagnosed with CF at 2 months due to pneumonia and a lung collapsing
• Scott was always embarrassed about hi coughing growing up but still was very involved in sports.
• Scott states: “CF has shaped and played a MOJOR role in my life growing up – people with CF don’t make plans for the future…?
• “Exercise and a Positive Attitude? these are Scott’s most important factors to maintaining Scott’s health.
• Scott states: “The biggest challenges facing adults with CF is insurance and medical expenses as people are living a lot longer with cystic fibrosis?
• Scott believes, “you have to own it and manage your CF?
• “I have CF but it does NOT have me…  

National Transplant Assistance Fund -The Financial Link to Transplantation


Jerry Cahill interviews Lynne Samson, the Executive Director of the NTAF on how they can help with fundraising for a costly lung transplant.

Mission Statement: To help raise funds for transplant and catastrophic injury patients by providing compassionate support, education and expertise to them, their families and communities.

• NTAF is a nonprofit 501 (c) 3 charitable organization and contributions to NTAF are tax-deductible. NTAF was founded in 1983
• Lynne states: "it's better to start fundraising as soon as you are listed at a transplant center"
• Lynn states: "people in the community love to support a cause and this gives emotional support to the patient and family going through the crisis"
• Fundraising events include: golf outings, spaghetti dinners, chicken fries, dances, and car washes,  to name a few.
• Money can be used for insurance co-pays, medications, re-locating for a transplant, meals, lodging, and living donor costs.
• NTAF has over 1200 active patient accounts and has risen over $4 million this year.
• "The goal of NTAF is to help the patient and family feel financially, emotionally, and mentally secure and that through the community support they will feel cared for"

National Transplant Assistance Fund

Medical Information Template for your Jump Drive

“Jump Drive? for Better Health Care
 
Jerry Cahill interviews Dr. Jamie Wells on putting medical information on a “jump drive?

• "Jump Drive?: also know as a USB drive or flash drive is a “plug-and-play? portable storage device that is lightweight enough to attach to a key chain that cost under $20.
• Dr. Wells states: “jump drives empowers us in our health care and enables patients to be their own advocates
• Medical information & records can be stored on a “jump drive? and this is extremely important to someone with a chronic disease or medical condition for doctor visits and emergency room visits.
• “Jump Drives? contain such information as emergency contacts, physicians contacts, past medical history, allergies/adverse effects, current medications, and laboratory test information.
• The BOOMER ESIASON FOUNDATION  will be putting a “Jump Drive? Medical Template up on their site (www.esiason.org) and offering the drives to individuals with CF with proper documentation.
   

Dylan Mortimer, at 25 "Keeps the Faith",in Battling CF and Focuses on Being an Artist and Graduate School

Jerry Cahill interviews Dylan Mortimer

* Diagnosed at 6 months of age in St. Louis
* Dylan also has a 23 year old brother with cystic fibrosis
* Growing up Dylan had a cough and was not hospitalized for a "tune up" until age 17.
* Dylan exercises at a gym doing the treadmill and weight training
* Dylan moved to NYC about a year ago and is attending the School of Visual Arts Graduate School and got married in May 2005
A newlywed Dylan believes "Love transcends all, even cystic fibrosis"
* "Although living with CF brings a lot more baggage and weighs you down, it makes you appreciate life "states Dylan.
* Dylan states: "My Faith in God helps me accept CF and gives me the energy to fight the battle"

Jerry Cahill interviews Cris Dopher

"I live to Run and Run to Live" States Cris Dopher, 34 Years Old, Who is Taking Cystic Fibrosis by the Throat and Taking Control of His Life.

• Diagnosed at 4 years old due to “failure to thrive?
• Cris grew up in Southern California and Missouri prior to moving to NYC
• “My parents did not panic when they heard the news about my diagnosis with CF?
• Cris has 2 sisters and I brother
• Attended Missouri State University as an undergraduate and New York University for graduate work in Fine Arts.
• Mount Sinai in New York is Cris’ CF Center
• Biggest challenge: “Time spent on treatments?
• “Although having CF is a major wake-up call… I try to see things in a more positive way and that opens up new doors and possibilities…?
• Cris believes the most important factors that keep him healthy are: “Family support, great doctors, and his motivation to research?
• Cris completed the Flying Pig Marathon in Cincinnati, Ohio in a time of 5 hours 25 minutes.
• Cris plans on running the New York City Marathon in 2006 and his goal is sub 5 hours
• “You are not alone with CF and therefore I like to contribute to the CF community.

Maggie Talboy interviews Jerry Cahill - "Better Living Through Chemistry"

• “My life is not about the cystic fibrosis… it’s about living and enjoying everyday!?
• Jerry was diagnosed at age 11 after several hospitalizations for pneumonia.
• Jerry comes from a very athletic family that includes 4 brothers and 1 sister.
• Jerry attended Xaverian High School in Brooklyn, NY and then went on to the University of Connecticut where he competed in varsity track &  field specializing in the pole vault.
• CF is a challenge and a competition… I will beat it as best I can because life is NOT a controlled experience?
• Jerry states: “I do not have time to sit around with IMPENDING DOOM – go out and experience life and manage your disease?
• Jerry “exercises for life? and believes that “exercise can slow down the progression of the disease?
• Jerry believes in being pro-active with his health and is very involved in NUTRITION including: I.V. vitamin drips, “lot’s of vitamins and juicing? and of course “exercise?
• Listed for a double lung transplant at NEW YORK PRESBYTERIAN and also seen at UNIVERSITY of NORTH CAROLINA at CHAPEL HILL – Jerry is very happy with his TEAM of doctors.
• Maggie asked Jerry what keeps him going...? “A passion for life and being involved with people, watching people grow and most important giving of yourself – not materialistic things.
• Jerry states: “I have my FULL METAL JACKET on and am ready for the transplant…!

  
   

Jerry Cahill interviews Dr. Jamie Wells

• Dr. Wells grew up in Philadelphia before attending YALE UNIVERSITY majoring in American Studies.
• Dr. Wells attending JEFFERSON MEDICAL SCHOOL in Philadelphia where she started out specializing in brain surgery prior to focusing on
  pediatrics.
• “Medical school = one paragraph on cystic fibrosis… all training comes from hands on at a CF Center? states Dr. Wells
• As an infant with CF: “Burden on parents to understand and deal with everything all at once?
• Dr. Wells states: “The teenage years are the most challenging as the typical teenager is not compliant?
• “Doctors and CF patients must have a PARTNERSHIP?
• Dr. Jamie Wells states: Due to the prognosis of the disease, “cystic fibrosis patients are dynamic and grow up very very quickly…?
• Dr. Wells strongly believes: “People with CF need someone to look up to and see that there are people living at age 49…?
• Regarding Stem Cell Research: “I am an advocate of anything that is going to advance science?
• Dr, Wells Rx for people with CF: “Be consistent with med.’s and therapy, even when you are feeling well, and maintain an optimal nutritional state so you can fight infection?
• “I am honored and privileged to know patients and their families with this disease… people with CF really get what is about to be alive!?

The Boomer Esiason Foundation and the Ohio Society for Respiratory Care award $1500 in memory of Heidi Norris RRT.

Heidi Norris was a Registered Respiratory Therapist who passed away in 2004 after a long hard battle with cystic fibrosis that included a double lung transplant in 1999.

Michael will be attending Youngstown State University in Ohio and majoring in tge field of Respiratory Care "Sharing the Breath of Life with Others"

Comments[5]

Ashley White, Awaiting a Double Lung Transplant at Duke Medical Center, Looks Forward to Being Able to "Breathe Again"

Jerry Cahill interviews Ashley White

• Ashley White was diagnosed with cystic fibrosis at 4 months of age.
• Ashley has 4 sisters and 2 brothers, one brother also has CF.
• Ashley attends home school daily.
• Medication, therapy, more medication, and more therapy Ashley spends many hours a day being compliant to here routine trying to stay healthy along with nightly tube feeding.
• Ashley enjoys scrap booking and spending time with her friends and family.
• Listed for a double lung transplant in March 2005 after being on oxygen 24/7 and when her FEVs dropped below 24.
• Ashley, along with her mom, had to face and make the big decision regarding the double lung transplant surgery.
• My Mom has been the biggest influence on my life
• KEEP GOING! Ashleys advice to others with CF and facing a transplant.
• Without my Mom, who pushes me, I may have giving up
  
   

Lisa White's Daughter Awaits a Double Lung Transplant at Duke Medical Center and Her Faith & Family Give Her Strength

Jerry Cahill interviews Lisa White

• Lisa’s daughter is awaiting a double lung transplant at Duke Medical Center in Durham, North Carolina.
• Lisa has the endless support from her family, friends, and faith.
• Lisa stresses? “Stay positive? and keep on “living life? regardless of the obstacles.
• “Keep researching EVERYTHING on cystic fibrosis and lung transplants? and most of all be “PRO-ACTIVE? and “VIGILANT?
• Lisa states: “Ashley and I never give up, you must have the SURVIVAL INSTINCT or LIFE WILL STOP!?

Jerry Cahill interviews Amy Purdy


Amy Purdy has been a social worker at Saint Vincent’s CF Center, in New York City, for over 8 years and “loves helping people?

• Amy grew up in Long Island, NY
• SUNY Albany undergraduate degree
• Adelphi University graduate degree in Social Work
• St. Vincent’s has over 170 cystic fibrosis patients where Amy works full time for the center.
• Amy has great relationships with her patients and knows “what there favorite flavor is in bubble gum?
• Amy deals with various issues including; medical insurance, medication compliance, educating families on CF, transplant issues, and “just being there? for the patients?.
• Amy states: “Teen years are critical for medication/therapy compliance, as this sets the stage for your future health?.
• St. Vincent’s has a “phone a friend? program for CF teens to speak to adults with CF
• Amy’s goal: “Take the burden off the young adults by becoming like a personal assistant?
• Amy’s advice to families: “Use ALL the resources at your CF Center?

Kristy Denninger Enjoying Life at age 28 with Cystic Fibrosis

Jerry Cahill Interviews Kristy Denninger

Kristy Denninger is 28 years old and has a phenomenal support team of family, boyfriend, and friends.

• Kristy was diagnosed with CF at 3 months do to “failure to thrive?.
• Kristy at age 14 also diagnosed with Diabetes.
• Degree in Social Work from St. Thomas College in New York.
• Kristy enjoys: “Family, Friends, and Vacationing?
• “Relaxing on the Beach is great for my Spiritual and Physical Health?.
• Kristy raised over $10,000 this year for CFF “Great Strides?.
• Kristy states: “Exercising on the treadmill for 20 minutes per day helps keep me healthy?.
• Kristy believes in “staying positive? and is empowered by the online Cystic-L Support Group.

Jerry Cahill interviews Laura Cianci


Laura Cianci has been a Home Infusion Nurse for the past 16 years working with patients with acute illnesses. Home infusion therapy offers flexibility to both the patient and the nurse.

• Laura has many CF patients that receive numerous antibiotics and steroids by IV.
  Patients can start home infusion care as young as 18 months
• “I love my patients, they are the reason why I do what I do?
• Laura states: “It’s important to mobilize the secretions, not only through IV antibiotics but also through postural drainage?
• Laura believes CF patients need to be more pro-active in their care.
• “I have learned to appreciate life more after working with my patients and seeing the fortitude they have for life…
• Laura states: CF has an effect on the entire family

   

Cystic Fibrosis Podcast Intro (38:05 Minutes)

Jerry Cahill Interviews Michael Marten

About three years ago Michael Marten received a double lung transplant at Duke University. In this interview Michael discusses his life experiences both pre and post transplant with host Jerry Cahill.

Michael Marten Background Information

• Age 45 -will be 46 in May
•  Those crazy "Mist Tents"
• 4 Years Old when diagnosed
• Fairly normal life until graduate school (St. Johns University).
• 1991- Graduated Grad School
• 1993- Started to Repeated infections (Disability from work)
• 1996- First put on oxygen
• 1999- Put on oxygen full-time
• 2001- Duke University Evaluation
• 2002 -July, Michael Moves to North Carolina with Family
• 2002-August 1, Goes to hospital for transplant
• 3 Years Post Transplant-Still Going Strong

Importance of Family Support Mechanism

Jerry Interview Questions

Show Notes 4-20-2005

1. DISCLAIMER:
The views expressed on the Cystic Fibrosis Podcast are those of Jerry Cahill and his guests, and not necessarily of the Boomer Esiason Foundation.

NOTHING ON THE CFPODCAST SHOULD BE CONSIDERED MEDICAL ADVICE.
SUCH ADVICE CAN ONLY BE GIVEN BY A PHYSICIAN WHO IS EXPERIENCED WITH CYSTIC FIBROSIS.
THE CONTRIBUTORS ON THIS PODCAST CANNOT BE HELD RESPONSIBLE FOR ANY DAMAGE WHICH MAY RESULT FROM USING THE INFORMATION ON THIS PODCAST WITHOUT PERMISSION OF THEIR MEDICAL DOCTOR

2. Dave Rimington Intro
Introducing Jerry Cahill and Natalie Stout

3. Intro-Jerry Cahill's Cystic Fibrosis Podcast

4. About Jerry:
Jerry and Natalie discuss Jerry's background and his involvement with the Boomer Esiason Foundation.

5. For more information on cystic fibrosis go to: www.esiason.org

6. Email Comments/Questions to podcast@esiason.org

Laurie McDonald Podcast


Title:
Laurie McDonald, Social Worker at UNC Transplant Center Makes a Difference


Jerry Cahill interviews Laurie McDonald, Transplant Social Worker at UNC Medical Center in Chapel Hill, North Carolina. Laurie works closely with the medical team, patient, and family to make sure everything runs smoothly with the transplant.

• Laurie is involved in lung, heart, liver, and kidney transplant social work.
• Cystic Fibrosis disease progression is the reason for over 50% of lung transplants at UNC.
• “Financial issues as well as re-locating and waiting for the transplant are the biggest challenges for patient and family? states Laurie
• UNC Transplant Center offers support groups to patients and family that is both educational and good forum for stress release.
• Laurie recommends setting up a “fundraising team? ASAP once you are listed to help ease the financial burden of unexpected expenses.
• Laurie’s advice:
  1. “Live everyday /minute of your life and don’t count on transplant to turn your life around?
  2. “Prepare Financially?
  3. “Exercise – the surgery and recovery will go smoother?

  
  
  
   

Laurie McDonald Podcast


Title:
Laurie McDonald, Social Worker at UNC Transplant Center Makes a Difference


Jerry Cahill interviews Laurie McDonald, Transplant Social Worker at UNC Medical Center in Chapel Hill, North Carolina. Laurie works closely with the medical team, patient, and family to make sure everything runs smoothly with the transplant.

• Laurie is involved in lung, heart, liver, and kidney transplant social work.
• Cystic Fibrosis disease progression is the reason for over 50% of lung transplants at UNC.
• “Financial issues as well as re-locating and waiting for the transplant are the biggest challenges for patient and family? states Laurie
• UNC Transplant Center offers support groups to patients and family that is both educational and good forum for stress release.
• Laurie recommends setting up a “fundraising team? ASAP once you are listed to help ease the financial burden of unexpected expenses.
• Laurie’s advice:
  1. “Live everyday /minute of your life and don’t count on transplant to turn your life around?
  2. “Prepare Financially?
  3. “Exercise – the surgery and recovery will go smoother?