In this episode, we talk with Katie O’Grady, a 17-year old senior at North Rockland High School in New York. Katie is an avid runner and is a member of the Red Raider varsity cross country and track teams. She talks about the role sports and exercise have played in managing her CF, but particularly how beneficial running has been in keeping herself healthy. 

• Katie’s first sport was soccer. She played for five years, but eventually gravitated away from soccer and towards running.

• Katie began running early in grade school, running side-by-side with her father.

• For Katie, running provides her with an opportunity to think and take in the outdoors around her.

• By the eighth grade, Katie was her school’s best competitive runner.

• Katie says running has helped keep sinus infections at bay, while improving her breathing.

• Aside from running, Katie keeps herself in shape through weight training, swimming, and biking.

• When she does get sick, running can be frustrating for Katie, but she stays motivated by remembering the fun times at past events, and the support she has from her friends.

• In 2012, Katie crossed the finish line at the New York City Half Marathon, running for Team Boomer.

This CF Podcast is made possible through an unrestricted educational grant from GILEAD to the Boomer Esiason Foundation.

For more CF Podcasts, visit www.jerrycahill.com

In this episode, we talk with Bret and Brennan Hatfield, both of whom are brothers and enjoying high school in Omaha, Nebraska. Bret is 15, Brennan is 17, and both are living, breathing and succeeding with cystic fibrosis.

• Brett and Brennan were diagnosed with cystic fibrosis when they were four years old.

• They acknowledge the challenge that cystic fibrosis presents, but are determined to lead normal lives.

• For both, being compliant means setting up and sticking to a daily schedule for taking medications.

• Some of their favorite things to eat for breakfast include biscuits, pop tarts, bacon, and a chocolate protein shake.

• Both brothers like to run at least two miles on the treadmill and lift weights together. At times, they can get competitive with each other.

• Brennan says one of the toughest parts about having cystic fibrosis is the time treatments take away from his social life.

• Brett and Brennan both swim during the winter to stay active.

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

Diagnosed at the age of 10 with cystic fibrosis, Lisa Ropers is now a happily married 33-year-old living in Holmesville, Nebraska. Lisa, in spite of dealing with the CF complication Pancreatitis, remains passionate about the fashion and retail management world. She loves going to the gym, doing yoga, and shopping – especially in second hand stores where she can find things to restore or ‘up cycle.’ 

• Pancreatitis is caused by pancreas not functioning properly and symptoms include nausea and pain. 
• “I deal with my pancreatitis by watching my fat and protein intake and by living more of a vegan lifestyle and I avoid dairy,” states Lisa.
• “I usually have to go into the hospital a few times a year when the pain gets severe, and I go on some antibiotics and NPO (nothing by mouth) for 4 or 5 days,” according to Lisa 
• Lisa suggests that people with CF eat better and avoid a high fat diet to keep their pancreas healthy.
• “My family and husband are a great support system for me when I am getting a severe attack as they help with all my errands and just comforting me. Oh yes, my 2 dogs and 2 cats also add support…”
• Lisa’s advice to people with CF…  “Don’t ignore it, don’t be in denial, and take care of you!”

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

In this episode, we talk with Gunnar Esiason, a 21-year old senior at Boston College about the daily use of a feeding tube as part of CF treatment. While Gunnar continues to remain compliant and use the feeding tube, among other treatments, he has been living independently and has been enjoying college life for the past three years.

• Gunnar was diagnosed with CF at the age of two. He is now 21 years old and a senior at Boston College.

•  Gunnar made the decision to use the feeding tube during his sophomore year in college, shortly after enduring a serious lung infection and losing significant weight.

• The surgical process of inserting the tube culminated with the placement of a “button”, an external port allowing Gunnar to receive the nutrients he needs in liquid form.

• When the tube is initially put in, doctors gave Gunnar a “goal weight”, which is the ideal weight they would like to see him reach and maintain. Before the feeding tube Gunnar’s weight was at 142 pounds. Now, he is weighing 175 pounds. His goal is 185 pounds.

• During the day, the feeding tube provides Gunnar with anywhere from 500 to 1,500 calories. At night, Gunnar may ingest upwards of 2,000 calories and sometimes totals nearly 5,000 calories per day.

• Gunnar says the feeding tube hasn’t stopped him from leading a full life and enjoying college with his friends.

• Gunnar washes his feeding tube with warm or hot water in an effort to sterilize it.

• The only adjustment Gunnar says he has had to make is learning how to sleep at night while using the feeding tube.

Big thanks to Genentech for their support and for making this CF Podcast possible.

For more CF Podcasts, visit www.jerrycahill.com

In this episode, we talk with Lynne Sampson, Executive Director and CEO of the Pennsylvania-based non-profit HelpHOPELive. Lynne and her team at HelpHOPELive are passionate about providing assistance to transplant and catastrophic injury patients, helping to bring down the cost of medical expenses.

•    HelpHOPELive works to mobilize communities in their efforts to raise money for transplant and catastrophic injury patients around the country, thereby helping the patients cover the difference between what insurance can cover and what the family can pay.

•    HelpHOPELive teaches communities how to fundraise and encourages everyone in need of help to engage their communities early.

•    Last year, the organization oversaw 572 online events for patients

•    Through HelpHOPELive, communities raised $8 million in 2011

•    Sampson says many times communities want to help, but don’t know how to do it. 

•    Using HelpHOPELive, patients will be able to keep all funds raised as tax-deductible, meaning the funds will not count towards your income.

•    All funds raised through HelpHOPELive are secured by the organization’s financial team, providing donors a sense that their donations will be accounted for and used for their intended purposes.

•    Patients using HelpHOPELive also qualify for additional grants, including HelpHOPELive matching grants

For more on HelpHOPELive, visit www.helphopelive.org

For 56 years, Jerry Cahill has courageously battled cystic fibrosis while awaiting a life-saving double-lung transplant.

In April 2012, Jerry got the call. A new pair of lungs had become available.

As a testament to his courage and dogged perseverance, Jerry crossed the finish line at the 2012 Boomer's Run to Breathe 10K - barely three months removed from his transplant surgery.

Now, for the first time since that surgery, Jerry opens up about life before and after receiving a new set of lungs.

July 21, 2012

Central Park
New York, NY

In its second year of existence, the Boomer's Run to Breathe 10K saw over 5,000 runners come out in support of the Boomer Esiason's fight against cystic fibrosis.

Among them, Jerry Cahill - a 56 year-old living, breathing and succeeding role model to the cystic fibrosis community. Barely three months after receiving a double-lung transplant, Jerry took to the pavement in Central Park and completed a challenging 10K.

Today, Jerry continues to inspire the CF community through his involvement in high school coaching,Team Boomer (www.esiason.org/teamboomer) and his newest initiative, You Cannot Fail (www.youcannotfail.com).

Follow Jerry through the CF Podcasts (www.jerrycahill.com), CF WindSprints (www.cfwindsprints.com), and via Twitter (@bigair).

April is "National Donate Life Month," a celebration which took on new meaning today when the Boomer Esiason Foundation's Jerry Cahill underwent a double-lung transplant.

Jerry, 55 and living with cystic fibrosis, is a volunteer who manages BEF's scholarship and transplant grants programs. He also founded the Team Boomer - Fighting Cystic Fibrosis athletic program, hosts a regular CF podcast and produces the CF Wind Sprintvideo series. In addition, Jerry last fall launched the You Cannot Fail: You Are the Hero of Your Own Story campaign.

Jerry's surgeons earlier today reported that the transplant procedure was a success and that Jerry has been transferred to the intensive care unit at Columbia University Medical Center.

Please join with us in sending thoughts and prayers to Jerry, his family, his medical team and the donor's family during the critical post-op time period. For updates on Jerry's recovery, please visit the BEF Facebook page.

We also invite you to visit Jerry's page in the CF Stories section of our website, where you can view his You Cannot Fail video and read through his complete biography.

Colleen Caul was born into a big Irish family in St. Louis, Mo. Growing up, Colleen was always active, but her whole life changed in 2004, when her uncle started to coach her little sister, Katie Rose, how to run. Katie Rose has cystic fibrosis. Elated to see the positive effect that running was having on her sister’s health, and inspired by their dedication, Colleen started to run.

In the past five years, Colleen has completed four marathons and recently completed the “Run for Roses,” a 65-day running pilgrimage to spread awareness, raise funds and share stories about cystic fibrosis.

Colleen founded the Run for Roses Foundation (www.runforroses.com) to support her efforts to raise funds toward a cure for CF.

-    In honor of her sister, Katie Rose, Colleen ran from St. Louis to New York City from July to September 2011. She ran 1,000 miles in 65 days for one dream: to cure cystic fibrosis.
-    Colleen ran 15.5 miles each day, and her stretching routine was about three hours a day. She ate Starburst candy for energy during her runs and refueled with chocolate milk.
-    During the 65-day run, Colleen blogged with friends and fans. In Ohio, she had the opportunity to run with a family that has two children with CF. “It was amazing, they both ran four miles with me,” Colleen says.
-    “People with CF never have a day off … when things got tough during a run, I just thought of that and said I can do it!” she says.
-     “Crossing the finish line in New York City was incredible,” Colleen says. “Katie, family and friends joined in for the last five miles – it was an out-of-body experience that I will never forget.”
-    The overall message Colleen wants Run for Roses to communicate is HOPE & POSITIVITY.


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

Josh Mogren: Moving Forward After Losing a Sister to CF

Josh Mogren is a 32-year-old with cystic fibrosis and cerebral palsy. Josh, who lives in St. Paul, Minn., discusses overcoming all obstacles with CF, including the loss of his sister, Angela, to CF. Josh has been happily married to Carly for five years, and also enjoys the company of their two dogs and the puppet, “Moganko.”  Josh has a blog (www.welcometojoshland.com), is a movie buff, enjoys singing karaoke, and is LIVING BREATHING & LOVING LIFE. 

• Josh was diagnosed with CF at birth; his older sister, Angela, also had CF.
• Josh has fond memories of his Angela: “Angie was strong-willed, very funny and a real prankster. My sister taught me to be a strong advocate for myself, and that is very important when you have an illness like CF,” Josh says.
• “Growing up, Angie was a lot sicker than I was, and that was very frustrating for her. I felt terrible about it ‘cause I was doing so much better – it was not fair,” he says.
• Josh believes it’s ok to be sad but that people with CF have to keep fighting and be HAPPY! 
• “Having fun and making light of things is the key to being happy. That is why I created my blog and YouTube site (“Welcome to Joshland”). I share a lot of my thoughts and stories about my life, CF, and otherwise,” Josh says. 
• Josh appreciates things a lot more since the loss of Angie, and he feels blessed to have a great family and friends.

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