CYSTIC FIBROSIS IS NOT YET CURED!
Sickboy
CBC
4.8 • 524 Ratings
🗓️ 28 May 2024
⏱️ 90 minutes
🧾️ Download transcript
Summary
Clarification: The median age of survival in Canadians born with cystic fibrosis is 60 years of age. The median age of death in Canadians with CF is 37 years of age.
When science fiction becomes a medical reality, the journey is anything but simple. Kelly Grover, CEO of Cystic Fibrosis Canada, dives into how Trikafta, the breakthrough CF drug, is revolutionizing treatment by targeting its root cause. While Trikafta brings significant physical health benefits, Kelly and Jeremie discuss the emotional and mental health challenges that arise as patients navigate new possibilities and uncertainties. The discussion highlights CF Canada's relentless efforts to support the CF community, advocating for research, improving access to treatments, and addressing the unique needs of those with rare mutations. Stick around for the end of the episode as Jeremie introduces the fellas to the work of the late/great Bob Flanagan - a performance artist who lived with CF and had a wild portfolio of art blending CF with BDSM.
For more info on Cystic Fibrosis visit here.
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Transcript
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| 0:00.0 | The Powering Politics Podcast is available six times a week, but you might not be. |
| 0:05.9 | If you want to catch up on what happened this week in politics, join me, Laura Dangelow and some of Canada's most tuned-in political strategists to break down the week that was. |
| 0:15.8 | Short on time, the weekly wrap has you covered with a new episode every Saturday. |
| 0:21.4 | This is a CBC podcast. |
| 0:37.4 | All right, folks, this week we have an extra special episode. |
| 0:40.6 | So as you may or may not know, I've been working tirelessly in the background here with the guys over the last few months, |
| 0:51.8 | putting together a podcast that is super meaningful to myself and to many |
| 0:57.9 | people across Canada called Breathless. It is CF Awareness Month, this month in May. We're |
| 1:04.2 | coming up to the end. And Breathless has one more episode left. If you haven't listened to it, |
| 1:10.6 | please go check it out. |
| 1:11.8 | I think you'd really enjoy it. |
| 1:13.9 | And it means the world to me, |
| 1:15.9 | because it's a podcast in partnership with cystic fibrosis Canada. |
| 1:19.5 | And we just talk about the state of CF. |
| 1:21.7 | And a big part of it kind of surrounds my grappling with CF in this world where medication has literally just given me a second chance at life. |
| 1:35.8 | And all the confusing feelings that come with that. |
| 1:38.2 | But what makes this episode of Sick Boy really special is that our guest today is the president and CEO of |
| 1:46.2 | Cystic Vibirosis Canada, Kelly Grover. |
| 1:48.7 | And Kelly is, she's one of those people that as soon as you meet them, you immediately |
| 1:57.6 | just have so much respect for them as a human. Just a wonderful speaker, |
| 2:05.3 | a very smart human, a very, very charismatic human. And I really, really love Kelly. |
| 2:14.8 | Not just because she is the leader of an organization that has played a role |
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