Making It Matter With Gunnar Esiason And Julia Rae

Claire Wineland, 20 with cystic fibrosis from California, joins the podcast to talk about her life with CF, her charity, Claire's Place, and all over her advocacy work within the CF community. Most recently Claire has been a featured motivational speaker and tremendous role model for people with, or without, CF. She mentions that she started her charity when she was 13 after dealing with some significant health issues. Claire also touches on some of the things that motivate her as well as her decision not to go onto the Lung Transplant list. Ultimately Claire is your typical, extrodinary 20 year old - bubbly, fun and living life to the fullest!

Josh Lewellyn-Jones joins the podcast again to recap his 24 hour fitness challenge. He talks about the amazing reach his event had, over 8 million people worldwide, coupled with his platform moving forward. Thanks to the event's success he is launching Team 24/7 as well as a charity CF Warriors, which are efforts to help motivate people to use exercise to redefine their lives. Finally Josh teases next year's fitness event, which is an attempt at a fitness world record.

Travis Flores, 26 living with cystic fibrosis, joins the podcast to talk about his journey through life with CF, advocacy, acting/writing/producing, transplant and now chronic rejection. Unfortunately this past fall, Travis was given the news that his life saving double lung transplant was beginning to fail as his new organs entered a state of chronic rejection. Just this week Travis learned that his body is fit for re-transplant and has been officially listed for a second life saving procedure. You can check out Travis' blog, "Chronically Happy" at www.ChronicallyHappy.org

Jon Whitbred, 36 living with cystic fibrosis and father of 3, joins the podcast to talk about what it's like to be both a dad and CF patient. Infertility is very common among men with CF, so Jon talks about he and his wife's path through IVF as well as some of the emotional burden that comes along with it. Aside from being a family man, Jon also works full time, so he talks about balancing life as a CF patient, father and workingman. He says that his routine and support system are invaluable to his health. His advice to other people with CF who might be thinking about starting a family, is to make sure everything is in place, health, finances and support system before taking the next big step!

Aleeya and Alani Young, 18 year old twins battling cystic fibrosis, and better know as the Salt Cysters, join the podcast to talk about their lives with cystic fibrosis. Recent high school graduates, they discuss some of their ambitions, including both of them heading off to the University of Cincinnati in the Fall. They've created the Salt Cysters YouTube channel which aims to raise some awareness for CF, show how they are able overcome adversity and life a healthy lifestyle.

Julia and I welcome Luke Doherty, 26 with cystic fibrosis from Dublin, Ireland, to the podcast this week. Luke talks his recent journey through a double lung transplant, which has needed to include chemotherapy treatment for PTLD. To that end, we talk about some of the differences between the American and Irish transplant listing procedures. Luke mentions that despite his failing health prior to transplant, he made fitness a priority in his life and he ultimately credits that to an initial speedy recovery. As you will find out, fitness is a major part of his life, to the point where it serves as a way for him to find a release from the challenges of CF. Luke is still very much in recovery from his transplant thanks to the PTLD, but he is making strides everyday to return to his life as a personal trainer.

Today we meet Rachael Russell, 22 living with cystic fibrosis. She is also a recent graduate of Duquesne University and 2x winner of a Boomer Esiason Foundation. Since graduating college, she fulfilled a a dream of backpacking through Europe for a month she will never forget. Rachael discusses packing for such a long trip, working around electric conversion for her Vest, concerns her family and medical team held and ultimately why she took the trip! She mentions that while not plan runs perfectly, sometimes jumping in and taking a risk is all we can do! Check out Rachael's travel blog here: https://cftraveler.wordpress.com

Julia and I invited on a couple of our old college roommates, Carmen Gatta and Miranda Borkan, on the podcast so they could give their perspective on living with someone who has CF. Carmen lived with me for three years, my sophomore, junior and senior years at BC. I met Carmen my freshman year when he lived across the hall from me and my buddy from high school, David. I felt that I wanted as typical a college experience as possible, and for that reason I lived with roommates all four years of school, including my freshman and sophomore years when I had a direct roommate (my friend David from high school). Julia on the other hand had a little bit different of an experience. She went into the roommate pool her freshman year and was assigned a suite with random roommates. So while she didn't have a direct roommate, she shared a living space with three people she hadn't met prior to enrolling into Fordham University. Miranda was one of those roommates and turned out to be one of her best friends!

Julia and I take a question this week that asks us how we bounce back after we get sick. We note that people with CF, regardless of how well they take care of themselves are always going to be at risk of developing an active infection or feeling under the weather. It can be frustrating when that happens, so what do we do to over come it? Julia and I mention a few moments in our lives when we've been down and how to reevaluate how we take care of ourselves and adapt to growing up and dealing with a progressive disease.

Sabrina Smith-Walker, 30 with cystic fibrosis from Alaska, joins the podcast. Her story is nothing short of amazing. After graduating high school she was diagnosed with cancer, which she went on to beat. From there she talks about her marriage and healthy lifestyle. Ultimately the podcast settles into Sabrina talking about her being a loving mother to her two year old son. She takes us through her conversations with her doctors, the pregnancy and finally her evolving routine as both a mom and CF patient. She notes that none of this would be possible without her incredible support system for which is so very grateful!

There is no cure for cystic fibrosis, and it is a fact that we cannot hide from. Julia and I recently received a question from the mother of a young boy with CF about the topic. While I'm not sure there really is a "right" or "wrong" way to discuss the disease's ugly side, I am confident in the idea that taking it head on is the best way to go about it. Julia and I discuss a few different strategies we have when it comes to dealing with the terminal side of CF.

William Marler, 22 with cystic fibrosis from Birmingham, England, joins the podcast to talk about his efforts in raising CF awareness on an international level. From his animated short film "PEP Mask," to his upcoming podcast series Straight From the Lungs to his London Marathon run in 2015, William has shown that it is possible to thrive with cystic fibrosis. William also discusses care in the UK as it relates to the rest of the world in a way parallel to my Cystic Fibrosis Around the World blog series currently running on www.GunnarEsiason.com

Julia and I invited the Salty Cysters to join the program this week to talk about the kind of friendship that can be created between two people living with CF. Tiffany, a recent double lung transplant recipient, lives in California, while Lea (who has already been on the podcast once before) lives in Baltimore. Lea mentions that a few years ago she was struggling and wanted to talk to someone who understood everything that people with CF go through - Tiff was that person! And now today they have a recognizable social media brand, the Salty Cysters, spreading awareness and raising money for the fight against CF. Of note: while they do mention the possibility of one day meeting in person, that is not something that I can personally advocate for. Cross-Infection guidelines are in place to keep people with cystic fibrosis safe from different strains of bacteria

Julia and I discuss the importance of being able to openly discuss cystic fibrosis with other people. Expanding the support system to include friends, teachers, teammates, school administrators, college professors, roommates and coworkers (just to name a few) can be vital to a person success in coping with CF. While it may not always be appropriate to openly share a person's CF, it is crucial to be able to talk openly about CF to an unsuspecting third party. Not only does it allow for someone new to learn about the disease, but it also helps open up the disease in a positive way.

In honor of April being National Donate Life Month, you will meet Margaret Carfora, who is 34 living with cystic fibrosis and 13 years post-double lung transplant. Margaret talks about life prior to receiving her new lungs, what led her to needing a transplant and a few complications she has had since the surgery, including Breast Cancer and Cervical Cancer. Despite all of the challenges Margaret has faced, she is a recent mother of two beautiful twins! This is an episode you will not want to miss!

Julia and I take a question from a listener this week who asks if we have a few strategies for getting kids with CF to stay compliant with their medications. We start off with a few points about taking pills (especially in bulk), then move on to the rest of CF treatments. We want to know what you do to convince your kids to stay compliant!

Josh Llewellyn-Jones joins Julia and I on the Making it Matter Podcast to talk about his 24 hr. Fitness Challenge. Despite living with CF himself, he plans on raising money and awareness for the fight against cystic fibrosis in an extreme fitness challenge, one that will test him physically and emotionally.

Julia and I discuss at what point we each realized we would be living with cystic fibrosis for the rest of our lives. For each of us, there was one moment we could point to specifically. We think nowadays, however, it doesn't have to be that way with the wide availability of educational materials.

Julia and I talk about competing in the Making it Matter fitness challenge and why people with CF need to rely so heavily on fitness. Making it Matter this week is Michael Caruso Davis, 14 with CF, who recently ran the NYC Half Marathon and raised over $25,000 for Team Boomer.

This week on Making it Matter, Julia expresses her frustration with the stomach flu. Since we're always forward thinking on the podcast, we decide to spin it into a positive and create the first ever Making it Matter FITNESS CHALLENGE to get Julia back on her feet!