최고 Cystic Fibrosis Podcast 팟캐스트 (2024)

1
Episode 18: CFNZ Lisa Burns 33:35

1y ago33:35

33:35

Ingrid chats to CFNZ Chief Executive, Lisa Burns. They discuss what CFNZ does for CFers and their families throughout their lives and what the organisation's plans are for the future to make sure no one is left behind now that Trikafta is funded. There's still no cure, and not everyone can take Trikafta, so CFNZ want all in the community to know th…

1
Episode 17: Wrestler 29:42

1y ago29:42

29:42

Ingrid chats to Dustin Raynor, better known as professional wrestler Dustin Bozworth. Dustin shares his story living with cystic fibrosis from childhood, to pro wrestling, to reality TV on ‘Stone Cold’ Steve Austin’s Broken Skull. It’s an inspiring conversation and he’s a very unique and ambitious person. We’re proud to have spent time learning mor…

1
Episode 16: Hospital 28:14

1y ago28:14

28:14

Ingrid shares their journey during a recent hospital admission and Orson gives his views on the whole adventure--- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message

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Episode 15: Bella Powell 1:10:42

1+ y ago1:10:42

1:10:42

Ingrid sits down with Bella Powell, a young woman with CF who was the first in New Zealand to get Trikafta thanks to the late Sir Bob Elliott – who gave her this gift of life during his final months by funding the drug for her. Following on from our last episode with Patrick Gower who broke the Trikafta story here in NZ, Bella shares her side of th…

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Episode 14: Journalist, Patrick Gower 54:50

1+ y ago54:50

54:50

Ingrid sits down with the well-respected and much-loved New Zealand journalist Patrick Gower to talk about the part he played in highlighting the need for funding of Trikafta for New Zealanders living with Cystic Fibrosis. This is a highly emotive interview and Paddy was very generous with his time. He shares how his experience getting to know the …

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Episode 13: Back to School 44:21

1+ y ago44:21

44:21

Ingrid chats with Helen Ulyatt, mother to an active 9-year-old CFer called Sophia. They chat about how she prepped for starting school and all the fears and worries surrounding this milestone, as well as managing trips to camp and hopes for the future. ZOONO DISCOUNT CODE INSIDE! Tune in to get your discount code to receive 2 x 50ml Zoono hand sani…

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Episode 12: Our diagnosis story 34:55

2y ago34:55

34:55

We discuss the journey to diagnosis for our son Orson at six months old. From pregnancy and birth, tests, diagnosis and processing the news. It's emotionally a highly charged episode but we end up laughing quite a bit, which we're pleased to be able to do together through this crazy journey. We'd love to hear from you. You can leave a voice message…

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Episode 11: Never Better 40:57

2y ago40:57

40:57

In this episode, Ian and I review the brilliant film Never Better and chat with its writer-director Julianne Fox. Julianne, who has CF herself, filmed Never Better in late 2020 and received great reviews when it played at film festivals. W#e chat about how the project got started, her life with CF and more. We hope you enjoy this episode of the pod…

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Episode 10: CF Toddler 45:08

2y ago45:08

45:08

In this episode, Ian and I get to grips with life with a CF toddler. It's a general update on how CF affects our everyday life, plus a few tips on navigating a few milestones as your little CFer grows up. As always, we end up blowing off steam with many fits of giggles. We hope you end up finding some of this info useful regardless of our gaffs or …

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Episode 9: Transplant 42:03

2+ y ago42:03

42:03

Most of the New Zealand CF community know Lizzie McKay, a 30-year-old person with CF who works for CFNZ as a Communications Coordinator. Her friendly and bubbly nature makes her easy to like but her story is not an easy one to hear as a mother of a little one with CF. In this episode, we discuss Lizzie's role at CFNZ and the organisation where she'…

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Episode 8: Kalydeco 49:00

2+ y ago49:00

49:00

Chris Macleod is a Candian with CF who was one of Canada's first patients on Kalydeco ten years ago. He’s now 52 and has advocated for CF for many years. He’s also written a book called Beating The Odds: 11 Lessons to Overcome a Health Crisis and Lead a Resilient Life. We talk about his life with CF, his career as a Lawyer and how that's helped him…

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Episode 7: Trikafta 55:12

2+ y ago55:12

55:12

Welcome to Season 2 or What the CF! We're so happy to be back and ready to share lots of CF stories about treatment with you.If you're part of the CF community and not aware of Trikafta (or Kraftrio) then you've been living under a rock! This 'miracle' treatment isn't yet funded in New Zealand and we want that to change ASAP. Edward Lee is a 39-yea…

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Episode 6: Book 51:22

3y ago51:22

51:22

Ingrid chats to Eilís Moroney, the author of 'Our Baby Has 65 Roses' and mum of a little person with CF - two-year-old AibhÍn, about diagnosis and how writing a book was her coping mechanism.Listen to the podcast for your chance to win a copy of the book, and email your answer to wtcfpod@gmail.com. You can also purchase the book here.Find out more …

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Cystic Fibrosis Podcast 250 - Being A CF Mom 6:45

3y ago6:45

6:45

In Jerry’s latest podcast, we meet Beth Gerritsen – mother to Charlie, who has cystic fibrosis, and Willie, who does not. From raising her boys in the Virgin Islands to moving back to the states, she shares some insight into CF care in the VI, how it impacted Charlie’s health, and more. This video podcast was made possible through an unrestricted e…

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Cystic Fibrosis Podcast 249 - CF Siblings Supporting Each Other 7:28

3+ y ago7:28

7:28

In his latest podcast, Jerry chatted with Charlie, 11 with CF, and his older brother Willie about the CF-sibling relationship. They talk about spending almost all of their time together, playing sports, their goals, and more. To his fellow CF patients, Charlie says, “Stay strong. Never give up. And always do your treatments.”This video podcast was …

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Cystic Fibrosis Podcast 248 - The Salty Scholar 6:15

3+ y ago6:15

6:15

In the latest CF Podcast, we meet Griffin Taylor, a 15-year-old who loves lacrosse and squash, is on his school’s robotics team, and is his class’s treasurer. During quarantine, Griffin started The Salty Scholar, a tutoring service to assist with virtual learning. When he saw his mom – a teacher – go through the virtual learning process, he realize…

1
Episode 5: Dads 42:55

3+ y ago42:55

42:55

Eddie, Henry and David are all parents of little CFers. Ian chats to these three dads about diagnosis, telling friends and family, and what NOT to say to a CF parent. Thanks again to our guests for sharing so candidly and we know it's going to help others in the community. For further info visit whatthecf.com. --- Send in a voice message: https://p…

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Episode 4: Genetics 34:02

3+ y ago34:02

34:02

Trigger warning - this podcast discusses pregnancy termination following pre-natal testing. Ingrid chats with Genetic Counsellor Kelly Sullivan about all things genes when it comes to getting the Cystic Fibrosis initial diagnosis. Kelly explains what causes CF, what happens in your genetic counsellor meeting, and the options for couples wanting mor…

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Cystic Fibrosis Podcast 247 - Patient and Family Education – ZephyRx 7:51

3+ y ago7:51

7:51

In the latest CF Podcast, Jerry speaks with Dwight Cheu, CEO of ZephyRx, a home-based respiratory diagnostic testing and therapy that allows patients to actively manage and improve their own lung health through telehealth, video games, and virtual reality.Cheu describes the positives of the product: at-home testing capabilities, prevention of exten…

1
Episode 3: Mums 41:42

3+ y ago41:42

41:42

Sophie, Kayla and Jessica are all mums of little CFers born during the pandemic. Ingrid chats to these mums about diagnosis, telling friends and family and what NOT to say to a CF parent. --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message

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Cystic Fibrosis Podcast 246 - Dealing with Post-transplant PTLD 8:06

3+ y ago8:06

8:06

The You Cannot Fail Rare Disease podcast series was created so that the Boomer Esiason Foundation can shine a spotlight on other people and organizations in the rare disease community. In the second episode, Swapna Kakani discusses dealing with post-transplant lymphoproliferative disorder after her small intestine organ transplant. In June 2014, af…

1
Episode 2: CFNZ Fieldworkers 26:01

3+ y ago26:01

26:01

Ingrid chats to Sue Lovelock, Southern Fieldworker for Cystic Fibrosis New Zealand. Sue has worked as a fieldworker for 14 years and knows all too well the pain and fear of diagnosis, the heartbreak of the disease and the positive and happy lives that people with CF can live in NZ. Thanks so much to Sue for such a great chat. Find out more about CF…

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Cystic Fibrosis Podcast 245 - Advocating For Your Rare Disease 8:18

3+ y ago8:18

8:18

The You Cannot Fail Rare Disease podcast series was created so that the Boomer Esiason Foundation can shine a spotlight on other people and organizations in the rare disease community.In the first episode, Swapna Kakani shares her story about being born with a rare disease, short bowel syndrome and later developing rare PTLD (Post-transplant lympho…

1
Cystic Fibrosis Podcast 244 - Accepting Cystic Fibrosis 6:48

3+ y ago6:48

6:48

“I believe in enjoying life and living it to the fullest, having fun, and just enjoying time.”Brayden Walsh, a 16-year-old living with CF, joins Jerry Cahill’s CF Podcast to share his experience as one of the 10% of patients without modulators available for treatment. Even though he deals with a number of other illnesses on top of CF, Brayden does …

1
Episode 1: Diagnosis 35:08

3+ y ago35:08

35:08

We discuss the journey to diagnosis for our son Orson at six months old. From pregnancy and birth, tests, diagnosis and processing the news. It's emotionally a highly charged episode but we end up laughing quite a bit which we're pleased to be able to do together through this crazy journey. We'd love to hear from you. You can leave a voice message …

1
TRAILER - Ep. 1 - Diagnosis 1:14

3+ y ago1:14

1:14

Check out the trailer for the very first episode of What The CF! A Cystic Fibrosis Podcast - COMING SOON - episode 1, we chat about our journey to getting a diagnosis for our son - just prior to the first lockdown in March 2020. --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Cystic Fibrosis Podcast 243 - Importance Of Exercise And Nutrition 4:33

3+ y ago4:33

4:33

In the latest CF Podcast, Anthony Esposito, aka Espo 2, shares why he loves fitness and nutrition. While he doesn’t have CF himself, he wants to inspire all people to improve their health with his Youtube channel – and to convince people that burpees are the best! This video podcast was made possible through an unrestricted educational grant from G…

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Cystic Fibrosis Podcast 242 - I Have CF, But Hockey Is My Passion In Life 4:23

3+ y ago4:23

4:23

“I love ice hockey because it really opens up my life and makes me stop thinking about cystic fibrosis and worrying about my health.” Meet Reilly Hoagland! Reilly was diagnosed at 4-years-old with cystic fibrosis, but has never let it stop him from living life the way he wants. Reilly is an honor roll student who loves sports and travels up and dow…

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Cystic Fibrosis Podcast 241 - COVID - 19 – A Terrible Virus & The Wonderful Humans Who Cared For Me 8:33

3+ y ago8:33

8:33

“I’ve always felt gratitude for the hospital staff, but this was over and above. We all know how contagious this is, and they knew that pretty early on. And yet, their job is to care for people and they did it regardless of their own risk. They did it with such kindness and caring.” Jerry caught up with Kay W. to talk about her experience of living…

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Cystic Fibrosis Podcast 240 - Going Through A Pulmonary Exacerbation 6:54

3+ y ago6:54

6:54

In Jerry Cahill’s latest podcast, he spoke with 30-year-old Enid Katz, who was diagnosed with CF when she was 3. Enid’s passion in life is horses – which motivates her to stay healthy, active, and fit, even when she isn’t feeling her best. She shares what it’s like for her when she has a pulmonary exacerbation, how it can feel defeating to have to …

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Cystic Fibrosis Podcast 239 - Talking To Kids About CF 9:29

3+ y ago9:29

9:29

Jerry Cahill spoke with Dr. Kelsey Finn about her book, “Having Cystic Fibrosis is a lot like being a Super Hero,” which relays information about CF so that kids and parents have a launching pad for more serious conversations. Dr. Finn’s goal is to support parents and give them the resources that they need to empower and educate their kids. She bel…

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Cystic Fibrosis Podcast 238 - Dealing With A Spouse’s Pulmonary Exacerbations 10:10

3+ y ago10:10

10:10

“I would tell a caregiver or a spouse of someone with CF that – all of those things you are feeling, the fatigue, the anger, the resentment, all of that is okay because we’ve all gone through that. It’s also really important for you, the caregiver, to take care of yourself.” Jerry sat down with Tom Kaminski, his wife of 27 years, Lynn, and their so…

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Cystic Fibrosis Podcast 237 - Having A Community 9:12

3+ y ago9:12

9:12

“I would recommend that anyone with CF who can physically get up and move, to get up and move. I have found that exercise has changed my life completely, and without it, I don’t know where I would be at this point.”Meet Scott Marraffa, a 25-year-old who is living with cystic fibrosis AND competed on American Ninja Warrior! Scott’s parents kept him …

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Cystic Fibrosis Podcast 236 - Leaving No One Behind - Reaching The Remaining 10% 9:44

3+ y ago9:44

9:44

“Everyone deserves that same realistic hope for a deep breath and for a future. And the work of Emily’s Entourage is focused on achieving that for every single person so no one with CF is left behind.” Jerry sat down – virtually – with Emily Kramer Golinkoff in his latest podcast to discuss the incredible work that she does with her 501(c)3, Emily’…

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Cystic Fibrosis Podcast 235 - Managing Your Life As A Teenager Part 2 6:29

3+ y ago6:29

6:29

In part 2 of Managing Your Life as a Teenager, Jerry sits down with Sean Randles… 6 years after their first podcast. Today, Sean is 15-years-old, runs track, and played freshman basketball. He is also a positive social media influencer, spending most of his time recording Tik Tok dances and sharing his life on Instagram – always in a positive way! …

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WTCF! A Cystic Fibrosis Podcast (Trailer) 0:59

4y ago0:59

0:59

--- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message

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Cystic Fibrosis Podcast 234 - Managing Your Life With CF As A Teenage Part 1 6:44

4y ago6:44

6:44

Jerry caught up with 17-year-old Colin Randles in his latest podcast. Colin, a Junior honors student, golfs, plays JV basketball, and rows crew. His brother Sean, who also has cystic fibrosis, is his biggest support system, and they do as much as they can together. Tune in to hear more about Colin and to see a flashback to his original appearance o…

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Cystic Fibrosis Podcast 233 - We Are All In This Together 9:28

4y ago9:28

9:28

“I can fight alone, but we can win together.”Last week, we met Eric Schandel… and this week Jerry sat down with his wife, Ashley! In the latest CF Podcast, Ashley shares a little about herself and what it was like when her daughter Remi Monroe was diagnosed with cystic fibrosis. She also talks about charity runs, the silver lining of having a child…

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Cystic Fibrosis Podcast 232 - The Emotional Side Of Being A CF Dad 9:24

4y ago9:24

9:24

All parents worry about their children – but parents of kids with cystic fibrosis have additional stressors and concerns. In the latest CF podcast, Eric Schandel sat down with Jerry Cahill to share his experience of being a CF dad – to Remi, who is now almost two.At the time of Remi’s diagnosis, Eric was alone at work when he got the news, and he d…

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Cystic Fibrosis Podcast 231 - Ups And Downs Of Having Two Siblings With CF 9:53

4y ago9:53

9:53

In Jerry’s latest CF Unmasked podcast, he sits down with Greg Love for an uncensored look at what it’s like growing up with two brothers with cystic fibrosis. From witnessing countless pulmonary exacerbations to feeling guilty about being healthy, Greg shares his experiences openly and honestly. Within his own family, Greg saw two sides of CF – his…

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Cystic Fibrosis Podcast 230: Traveling With CF, featuring Christie Fogelstrom 9:58

4y ago9:58

9:58

“I am not defined by my disease. I have CF, but I am not CF. I can do what everyone else can do; I just might have to do it a little bit different. I might have to add in some treatments during the day. But I am strong. I can do it all.”Christie Fogelstrom joined Jerry on his latest CF Podcast to discuss traveling frequently for work while living w…

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Cystic Fibrosis Podcast 229 - CF Medication Insurance And Prior Authorization 11:07

4y ago11:07

11:07

In the latest CF Podcast, Jerry Cahill interviewed James Colligan, Director of Sales and Business Development, and Danielle Maffei, Lead CF Pharmacist, at Total Care RX, a specialty pharmacy that focuses on lifting the financial burden of patients living with cystic fibrosis. Danielle and James discuss their focus of educating CF patients about the…

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#1 | What Actually Is CF?, Testing, Diagnosis, Cross-infection 8:52

4+ y ago8:52

8:52

Welcome To The First Educational Episode! Diving deep into what CF actually is and how people are tested and diagnosed. Enjoy! :) Instagram is @jodicocker , please don’t hesitate to let me know of topics you would like to me cover

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Welcome Episode! | Fearless With A Fearful Illness 4:30

4+ y ago4:30

4:30

Just a quick introduction into my Cystic Fibrosis podcast “Fearless With A Fearful Illness” and what I have planned for it. If you have CF or want to know more about daily thoughts, struggles, experiences of general life then watch out for the next episode coming soon. Enjoy :)

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Breathe In #98 - The Legal Marriage Question 34:01

5y ago34:01

34:01

This week on Breathe In, Tiffany is on her own again while Gunnar battles his way through final exams. Tiffany is joined by a new voice on the podcast, Holly Seay, 24, from Georgia, a newlywed with CF. Holly takes us through her life with CF and how she met her now husband. Prior to their wedding, Holly and her now husband never lived together. Hol…

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Breathe In #97 - Misdiagnosed 39:48

5y ago39:48

39:48

On this episode of Breathe In, Gunnar takes the day off and Tiffany takes over with a returning guest, Audrey Kostelec, 23 from Washington State. You may remember Audrey from the emergency podcast we had on FaceBook Live in March. This time we talk about Audrey and her CF journey. Audrey explains how she was misdiagnosed and has recently been place…

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Breathe In #96 - The Triple Combo 27:53

5y ago27:53

27:53

A mere few days following the FDA's approval of Trikafta, cystic fibrosis patients across the United States began dosing. This week's podcast looks back at Gunnar's time in the triple combo study. Think of this podcast as a follow to Gunnar's blog over on GunnarEsiason.com. Gunnar talks about both the immediate and long term affects of having been …

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Breathe In #95 - Breathe In Fall 33:09

5y ago33:09

33:09

Gunnar and Tiffany welcome back the podcast after a brief (unplanned!) hiatus. Tiffany announces that she started working a new job and has begun living out her goal of working full time. Gunnar talks about fighting through a round a midterms in the first quarter MBA term. The duo chat about getting their flu shots, why CF community members must ad…

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Breathe In #94 - Self Care 53:41

5y ago53:41

53:41

After a few weeks off, Gunnar and Tiffany return to the podcast with Gunnar's girlfriend, Darcy. This time, though, Darcy puts on her social worker hat and takes the podcast through a clinical lens into the world of self care. It's established early on in the podcast that self care is a bit of a misnomer these days because of Instagram, while Darcy…

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Breathe In #93 - Pregnancy With Low Lung Function 31:21

5y ago31:21

31:21

Tiffany is joined by Ashlee Terwilliger, 35, with cystic fibrosis and a double lung transplant survivor. The two talk about Ashlee's life growing up and how becoming a teacher affected her health and how she handled all the germs. As her health declined, she became pregnant and Ashlee takes us through being pregnant and labor with a low lung functi…

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