WTCF! A Cystic Fibrosis podcast

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تمت الإضافة منذ قبل four أعوام

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All About Change

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Chris Nowinski - Protecting Athletes from Head Injuries & Preventing CTE 27:58

منذ 1 day27:58

التشغيل لاحقا

قوائم

إعجاب

احب

27:58

Chris Nowinski is a former football player at Harvard University and professional wrestler with WWE, World Wrestling Entertainment. After enduring a career-ending head injury, Chris has dedicated his professional life to serving patients and families affected by brain trauma, particularly Chronic traumatic encephalopathy, or CTE, a progressive neurodegenerative disease that develops after repeated head injuries. Jay and Chris discuss the state of head injuries in American athletics, the difference between advocating for head safety at youth and professional levels, Chris’ newest research, and much more. Episode Chapters (00:00) Intro (00:50) changes in the culture around concussions in the past two decades (02:39) padded helmet technology (03:55) concussion reporting in the NFL (10:35) Chris’ career path and concussion history (14:52) connecting with activists who haven’t themselves suffered a traumatic brain injury (17:42) SHAAKE - a new sign to identify concussions (20:53) Unions can help players advocate for safety policies (23:10) final thoughts and goodbye For video episodes, watch on www.youtube.com/@therudermanfamilyfoundation Stay in touch: X: @JayRuderman | @RudermanFdn LinkedIn: Jay Ruderman | Ruderman Family Foundation Instagram: All About Change Podcast | Ruderman Family Foundation To learn more about the podcast, visit https://allaboutchangepodcast.com/…

WTCF! A Cystic Fibrosis Podcast

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When our son was diagnosed with Cystic Fibrosis at six months old we were shocked and devastated. From the first moment seeing his foggy little lungs, we knew this was gonna be a rollercoaster and we weren't wrong. What the CF! was born out of a curiosity to learn more, support others, and share experiences while we navigate our own CF journey. We want to tell the stories of others and answer the FAQ's that come along with a diagnosis. We'll seek the knowledge of experts and those living with CF to help to paint a well-rounded vision of what living with Cystic Fibrosis.

20 حلقات

#Fitness #What The CF! A Cystic Fibrosis Podcast

WTCF! A Cystic Fibrosis Podcast

updated منذ عامين

منزل السلاسل•Feed

20 حلقات

#Fitness #What The CF! A Cystic Fibrosis Podcast

كل الحلقات

1
Episode 18: CFNZ Lisa Burns 33:35

منذ 2 years33:35

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 that they are there for everyone. Listen to end to hear an exclusive fundraiser coming up from Lisa for Sweatember! --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 17: Wrestler 29:42

منذ 2 years29:42

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 more about his amazing life story so far. --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 16: Hospital 28:14

منذ 2 years28:14

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

منذ 2 years1:10:42

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 the story – her childhood in hospital, facing declining health in her teens and then becoming the face of the CF awareness and Trikafta campaign in New Zealand, to her journey working in some of the biggest and best theatrical productions in Australia. I can not thank Bella enough for her honesty in what is an often difficult conversation that brings back lots of memories, both good and bad. What comes through loud and clear is her love and admiration for Sir Bob and all that he has given her. She articulates it all with poise, authenticity and positivity. Thank you Bella xx Love the podcast? Support us through buymeacoffee.com/wtcfpod ZOONO DISCOUNT CODE INSIDE! Tune in to get your discount code to receive 2 x 50ml Zoono hand sanitiser for free when you use our exclusive global code with any other purchase. And, the whole store is currently on 40% off (while stocks last, excludes the UK) so visit zoono.com today for this fantastic offer! --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 14: Journalist, Patrick Gower 54:50

منذ 2 years54:50

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 NZ CF community has changed his life and what it was like to finally be able to announce that Trikafta had been proposed to be funded in NZ from April 2023. We acknowledge that not all people with CF can take or will be eligible for Trikafta. Please ensure you go to CFNZ for all official announcements and details. Tissues at the ready for this one. Enjoy! ZOONO DISCOUNT CODE INSIDE! Tune in to get your discount code to receive 2 x 50ml Zoono hand sanitiser for free when you use our exclusive global code with any other purchase. And, the whole store is currently on 40% off (while stocks last, excludes the UK) so visit zoono.com today for this fantastic offer! --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 13: Back to School 44:21

منذ 2 years44:21

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 sanitiser for free when you use our exclusive global code with any other purchase. And, the whole store is currently on 40% off (while stocks last, excludes UK) so visit zoono.com today for this fantastic offer! --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 12: Our diagnosis story 34:55

منذ 2 years34:55

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 for us here - comments, stories or questions. And, feel free to comment, like, share and subscribe on any other channels. If you'd prefer to email us please contact wtcfpod@gmail.com --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 11: Never Better 40:57

منذ 2 years40:57

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 podcast. Head back to our blog to read our full review of Never Better. Follow Never Better on Instagram for information on when and where you can watch the film. --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 10: CF Toddler 45:08

منذ 3 years45:08

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 at the very least we manage to make you smile. Love the podcast? Support us through buymeacoffee.com/wtcfpod Find us via the links shared or on the platform links below or search What The CF! A Cystic Fibrosis Podcast where ever you get your podcasts. LISTEN ON APPLE PODCASTS LISTEN ON SPOTIFY LISTEN ON GOOGLE PODCASTS --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 9: Transplant 42:03

منذ 3 years42:03

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's found a whole new family. She also shares very candidly her journey to getting a lung transplant aged 21. If you are new to the world of CF maybe don't start with this episode as a discussion around transplants could be too confronting. However, if you're keen to know more about the process and recovery then listen to this brilliant chat with Lizzie. She's so upbeat ad honest about her life and health and hands out prize pieces of advice like candy! You can follow Lizzie on Instagram as @lizziemckay Email her at comms@cfnz.org.nz Love the podcast? Support us through buymeacoffee.com/wtcfpod --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 8: Kalydeco 49:00

منذ 3 years49:00

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 advocate for the Canadian CF community and how his book can help us all become more resilient. You can follow Chris on Instagram as @chrismacleodbto Get your hands on a copy of Chris's book at https://www.beatingtheodds.ca/ Love the podcast? Support us through buymeacoffee.com/wtcfpod --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 7: Trikafta 55:12

منذ 3 years55:12

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-year-old PWCF living in Wellington. He self funds Trikafta and is celebrating two years on this life-changing drug. I wanted to speak to Ed to find out more about his life with CF and his journey to getting Trikafta. Many of you will know him from various media interviews he's given and his involvement in campaigning to get Trikafta for Kiwis. Ed was very open, knowledgeable and positive about the future so I hope you enjoy getting to know him better in this podcast. You can follow Ed on Instagram as @kiwi_cf_warrior Love the podcast? Support us through buymeacoffee.com/wtcfpod Find us via the links shared or on the platform links below or search What The CF! A Cystic Fibrosis Podcast where ever you get your podcasts. Spotify Apple Podcasts Google Podcasts --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 6: Book 51:22

منذ 4 years51:22

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 about CFNZ here to access resources. What the CF! A Cystic Fibrosis Podcast was born out of a curiosity to learn more, support others, tell stories and share experiences while we navigate our own CF journey. Series one of the podcast will focus on diagnosis and will feature conversations with Cystic Fibrosis medical experts, CFNZ, Genetic Counselling, and more. Ingrid and Ian’s story: “When our son was diagnosed with Cystic Fibrosis at six months old we were shocked and devastated. The road to diagnosis took several painful weeks. What started with kisses on salty skin soon became a persistent cough prompting many GP visits and eventually an X-Ray - the results of which opened the gates to the possibility of CF. From the first moment seeing his foggy little lungs, we knew this was gonna be a rollercoaster and we weren't wrong. Only a week after diagnosis we were chucked into the COVID lockdown left to digest this huge news within our wee family. The overwhelm was real, and although the team at the hospital were amazing, it was the online community of CFers and their families where we found an abundance of warmth and understanding.” What the CF! A Cystic Fibrosis Podcast is currently seeking funding and taking donations, 10% of which will go to Cystic Fibrosis New Zealand. For more information contact Ingrid on wtcfpod@gmail.com --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 5: Dads 42:55

منذ 4 years42:55

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://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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Episode 4: Genetics 34:02

منذ 4 years34:02

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 more children. Check out our blog for further reading as discussed in the podcast. --- Send in a voice message: https://podcasters.spotify.com/pod/show/what-the-cf-pod/message…

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WTCF! A Cystic Fibrosis Podcast

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