Podcasts about trikafta

The True Blue Podcast is proud to introduce Cst. Tyrus Sleightholme (Class #174) and so happy to see him achieving his goal of serving as a police officer.  Tyrus was born with Cystic Fibrosis and thankfully remained healthy as a child, fortunately once he received the live changing medication “Trikafta” his goal of becoming a police officer became very achievable. Tyrus was very active in sports as a kid and even played college baseball before getting the new medicine.  He comes to VicPD with previous experience working as a By-Law Officer and you'll hear about his compassion for people and his drive to serve the public.  Thank you to his proud father, retired Sergeant Dale Sleightholme for sharing his memories and some anecdotes about Tyrus. Good luck to Tyrus in his policing career.  Go "Red Sox"!Sound editing done by Todd Mason.More about the Victoria City Police Union (VCPU): - Tweet us at https://twitter.com/VicPD_Union - Follow us on Instagram at https://www.instagram.com/vicpd_union/ - Find us on FaceBook at https://www.facebook.com/truebluevictoria/ - Visit our website for information at https://truebluevic.ca/ - Email us at media@vcpu.ca for any media inquiries or requests to be on the True Blue Podcast

Hierdie week op #GROOTtrauma bring Venita en Dr. Jaco van Niekerk vir jou ‘n propvol program vol mediese insigte en interessante gesprekke! -Ons begin met ‘n mediese vasvra – weet jy wat die normale liggaamstemperatuur vir ‘n gesonde volwassene is? -Daar is BAIE goeie nuus vir sangeres Tamlyn Wessels – haar mediese fonds het die wondermiddel TRIKAFTA goedgekeur. Dr. Jaco brei meer uit oor hierdie “miricle drug”. -‘n Belangrike waarskuwing van die Nasionale Instituut vir Oordraagbare Siektes – gevalle van witseerkeel neem landwyd toe. ‘n Nuwe studie wys dat ‘n lemoen per dag depressie kan weghou! Ons gesels oor hoe dit moontlik is en of dit ‘n impak het op mense wat reeds antidepressante gebruik. -In ‘n eksklusiewe onderhoud praat ons met Prof. Berend Mets, ‘n spesialis in narkose. Hy deel sy kennis oor hierdie belangrike mediese veld en sy betrokkenheid in ander areas van gesondheidsorg. -Dr. Jaco se wenk van die week – ‘n slim gesondheidswenk om jou gesond en sterk te hou!

欢迎收听雪球出品的财经有深度，雪球，国内领先的集投资交流交易一体的综合财富管理平台，聪明的投资者都在这里。今天分享的内容叫聊聊生物医药这个行业，来自LTLyra。生物医药这个行业，两类公司，biotech，biopharma。这两类公司之间，隔着天堑，或者说，这两类公司，需要的能力，是截然不同的。生物医药这个行业，基本可以分成三段能力：研发，临床和商业化。所谓biotech，基本就是只具备研发，强一点的，加上部分或者全部临床，顶天了。所谓biopharma，就是具备以上三段能力的完整体。研发能力，放在全球都是一样的。但临床和商业化能力，国内和海外，也是隔着天堑。实际上，临床和商业化能力，很大程度上，是关联的。一个药，做临床的医生和医院，基本和成药以后销售药品的医生和医院，是一波，当然，临床成功，需要把药卖到更多的医院去。一个只有研发能力的biotech，站在一个在这个市场商业化了很多产品的pharma之前，基本就跟一个小孩站在一个大人跟前一样。不要小看临床和商业化的资源，这是这个行业最核心的资源，比研发能力还重要。研发能力，可以用钱买到；临床和商业化资源，本质上，是很多年，开发了很多药，缓慢跟医生和医院建立的信任关系。所以，全世界，这个行业的商业模式就是，biotech负责研发和早期临床；如果数据优异，把产品 B D 给pharma，由后者负责后期临床和商业化，这是这个行业最有效率的运行方式。生物医药这个行业，在研发端，天然是逆集中的。你永远不知道，下一个最好的药，在哪个犄角旮旯的实验室里。所以，我们就看到，手握商业化资源的跨国公司，拿着美元，全世界买买买。Biotech，实现股东价值的方式，只有三种。第一，把产品卖给pharma；第二，把自己卖给pharma；第三，自己成为pharma。以上三种，难度递增，第三种更是地狱级难度。Biopharm，实现股东价值的方式，只有一种，就是卖药。不管这个药是自己研发的，还是别人研发出来，然后自己买来的。那么，如何从biotech晋级成biopharma呢？大体上，只有一种途径，就是靠一款及其优秀的大药打天下，逐步站稳脚跟，靠这个大药提供源源不断的现金流，支撑不断的研发，如果后续管线能够跟上，逐步成为biopharma。这个说起来容易，做起来极难。因为这行业竞争非常激烈，biotech开发出一款好的产品，很难有足够的时间靠自己推动商业化。同一个产品，pharma从三期临床推到商业化，可能2年时间，但biotech，2年时间，三期临床，入组可能还没有完成。除非这个药好到没有竞品，可以自己慢慢搞，否则，这行业，慢就是死路一条。同靶点同机制的药，如果疗效没有代差，第一个上市的吃肉，第二个上市的喝汤，后面的，基本以收回研发成本为目标。举几个历史上成功越过这道天堑的例子。福泰制药。依靠罕见病药品，全球首款针对具有特定基因突变人群的囊性纤维化根本原因进行治疗的药物KALYDECO站稳脚跟，然后，在这个领域，持续迭代出ORKAMBI和TRIKAFTA，才站稳biopharma的地位。TRIKAFTA，2024年已经是百亿美金销售的大药。就是靠这个强大的现金流，福泰制药才发育起来。根本上，福泰制药能发育起来的原因，是他从罕见病切入，没有对手，才找到发育的时间。但是，福泰制药1989年成立，到2012年KALYDECO上市，中间吃土了20多年……再生元。依靠治疗湿性黄斑变性等眼科疾病的Eylea打天下。Eylea，百亿美元年销售额的大药。依靠Eylea的现金流，开发出大名鼎鼎的度普利尤单抗，又一个百亿美金峰值的大药。但是，再生元1988年成立，Eylea 2011年上市，中间也是20多年……一个“国产”样本，百济神州。同样，一款大药，泽布替尼打天下。在礼来的变构 B T K 抑制剂三期临床折戟，阿斯利康阿卡替尼联合维奈克拉三期临床数据差强人意的背景下，没人怀疑泽布替尼是50亿销售峰值的大药了吧？百济神州这个样本有点特殊，他能在这么短的时间，从biotech晋级成biopharma，除了泽布替尼这款大药，另外一个依靠的就是中美港三地资本市场。几年时间，百济在三个市场融资百亿美金，用这些钱，疯狂的撕开欧美市场的一个口子，把泽布替尼推了进去。这个事情，前无古人，后面也不会有来者。再者，这个世界上，即使强如Genmab，开发出百亿美元销售峰值的达雷木单抗，和几十亿美元销售峰值的奥托珠单抗。也只能无奈把两个产品分别BD给强生和诺华，自己依然是一个biotech。生物医药这个行业，国内和国外，就是两个市场。同一个药，美国药价是国内的十倍到几十倍；美国药价是欧洲的几倍；事实上，这个产业，就是美国市场补贴了全世界的生物医药研发。所以，判断一家生物医药公司的上限，有且仅有一个标准，就是能不能把药卖到美国去。国内药企，最强的那批，就是能把一个或者几个大药，卖到美国去的公司。做一个好药挺难，但想把这个药卖到美国去，更难。尤其，在当前这种地缘政治环境下。但是，这个行业，天然就有一种规避这种地缘政治风险的模式，叫做授权合作。通过授权，让渡部分权益，变现自己的研发能力。前面为啥说百济神州前无古人，后无来者？原因就是，他在一个最好的时机，即中美关系尚可，公开互怼前夕，融到了很多钱，完成了从biotech到biopharma的惊险一跃。况且，可能大多数人不知道的是，百济神州，其实是一家披着中国外衣的美国公司。他家老板，是纯正的出生在美国的白种人；他家股东，大多都是欧美资金；百济，其实就是借中国优秀的研发能力，走出来的一家美国公司。这么多年，真正从国内走出去，在全球成为biopharma的，其实只有一家半公司，如果百济神州算一家的话。另外的半家，是金斯瑞孵化出来的传奇生物。传奇生物，成为biopharma，靠的也是一款大药，预期百亿美金销售峰值的西达基奥伦塞，但传奇生物只有这个药一半的权益。每次说到传奇生物，经常有人认为金斯瑞拆分传奇生物美股上市，通过利益输送，传奇生物股权越来越低。但其实，开发西达基奥伦塞这个百亿美金销售峰值的大药，前前后后，传奇生物投入了很多资金。不通过分拆传奇生物美股上市，金斯瑞2、300亿港币市值的体量，在羸弱的港股，很难能融到足够的钱。西达基奥伦塞这个药，传奇生物和强生一边一半权益。包括临床费用，产能建设，这些钱，都要一边一半。为开发这款药，到目前为止，双方已经累计投入30多亿美金。一边16亿美金以上。传奇生物，除了拿到强生给的首付款3.5亿美金，还通过美股IPO以及增发，融资十几亿美金，刚刚够这个产品的开发投入。事实上，金斯瑞当时做出了最合乎逻辑的选择，就是分拆传奇生物，让他独立融资发展。如果当时他抱着这个金蛋不松手，因为缺钱跟强生搞出矛盾，耽误了这个药的开发，才是对全体股东利益的伤害。跟着强生开发一个百亿美金大药，在这个过程，传奇生物获得的最大隐形彩蛋，就是建立起了在海外的临床和商业化能力。这个能力，如果用金钱衡量，我想，可能是数十亿美金级别的。为啥强生出资150亿美金收购传奇生物，金斯瑞不卖？其实，150亿美金，是对西达基奥伦塞一半权益的合理报价。但传奇生物来说，他不仅只有这一个药，他还拥有难得的，作为一个全球biopharma的临床和商业化能力。这意味着，后面的管线，他都是有能力在海外独立商业化的，这个价值是无法衡量的。所以，说了这么多，知道怎么投生物医药公司了吗？不是非得能自主海外商业化大药的公司才能投。但是，要买那些市值和能力匹配，而且头脑清醒，战略正确的公司。如果一个几十亿港币市值的小公司，手里拿着几个还在临床前期的产品，然后每天畅想自己去海外卖药，那他的潜力是令人担忧的。但如果一家几十亿港币市值的小公司，手里有个已经临床三期，确定FIC或者BIC，且能有10亿美金级别销售峰值的产品，而且战略很清晰，就是要跟跨国公司合作开发这个产品，那就是极好的投资机会。但是，最好的那个投资机会，一定是那种手里握着大药，最好有百亿美金销售峰值的大药，而且，能正确衡量自己能力，战略选择正确的公司。比如，靠国内市场站稳脚跟，有稳定的基本盘，然后，通过合作走出国门，逐步培养自己的能力，依靠优秀的管线排布，慢慢往全球biopharma进化的公司。对于投资人来说，我们脑子一定要清醒，明白自己买的到底是什么。如果我们买的是就是一个biotech，但他搞不清自己的边界，偏偏想自己商业化产品，那就是个悲剧。这个行业，天然就不好懂，所以，搞点似是而非的概念，在牛市的掩护下，疯狂割韭菜的公司，需要我们谨慎辨别并作出理智的决断。

If Fierce Pharma Marketing’s annual list of the top 10 biggest potential drug launches of the coming year is any indication, biopharma may soon be in for a blockbuster boom. All together, the 10 meds that made the 2025 list stand to generate a whopping $29 billion in annual sales by the end of the decade. In this week’s episode of The Top Line, we dig into the report’s predictions. Fierce’s Andrea Park and Eric Sagonowsky take a deep dive into the top three drugs on the list—all of which had already snagged their first FDA approvals by this episode’s release—and highlight some of the prevailing trends from past years’ reports, including repeat entries, popular indications and drugs that never had the chance to meet their predicted potential. To learn more about the topics in this episode: Top 10 most anticipated drug launches of 2025 Vertex snags FDA nod for once-daily cystic fibrosis triplet Alyftrek as switch from Trikafta kicks off Datroway, 2nd ADC from AstraZeneca-Daiichi collab, wins first FDA nod in breast cancer Vertex scores FDA nod for long-awaited non-opioid pain reliever Journavx This episode is brought to you by Cencora. Learn more at cencora.com/breakthrough.See omnystudio.com/listener for privacy information.

In this episode of It Happened To Me, co-hosts Beth Glassman and Cathy Gildenhorn sit down with Laura Bonnell, a seasoned journalist with 25 years of experience in Detroit, founded The Bonnell Foundation in 2010 after her daughters, Molly and Emily, were born with cystic fibrosis (CF). Despite having ten siblings between them, Laura and her husband, Joe, had no idea they were carriers of the disease, as no one else in either family had been diagnosed with CF. Driven by her personal experience and professional expertise, Laura used her platform as a reporter to raise awareness about CF. Before establishing The Bonnell Foundation, she actively raised funds for the Cystic Fibrosis Foundation, participating in the Great Strides Walk fundraisers and speaking at CFF events. Bonnell also organized events like the first Celebrity Softball game with the Detroit Tigers' wives and launching the "Portraits of Cystic Fibrosis" calendars in 2003—both of which are integral to The Bonnell Foundation's fundraising efforts today.  Through her foundation, Laura continues to advocate tirelessly for those affected by CF, leveraging her journalistic skills to amplify the cause and support the CF community. Topics Covered: Understanding Cystic Fibrosis: What it is, how it affects the body, and the daily medical routines required to manage it. Personal Journey: Laura's experience with her daughters' diagnoses and the challenges her family faced. Advocacy Through Journalism: How Laura's skills as a journalist influenced her podcast, Living With Cystic Fibrosis, and her advocacy work. The Bonnell Foundation: From organizing the first Celebrity Softball game with the Detroit Tigers' wives to producing the "Portraits of Cystic Fibrosis" calendars, Laura discusses her foundation's mission and impact. Challenges and Progress: The evolving landscape of CF treatment, including the life-changing potential of medications like Trikafta. Community Support: How The Bonnell Foundation helps families navigate life with CF and fosters a sense of connection. Resources Mentioned: The Bonnell Foundation The Bonnell Foundation Facebook The Bonnell Foundation X The Bonnell Foundation Instagram Living With Cystic Fibrosis Podcast Connect with Us:  Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.   

Das Medikament Trikafta hat das Leben unzähliger Menschen zum Besseren gewendet, die an der Erbkrankheit Cystische Fibrose (CF) leiden. Doch das Märchen hat eine Kehrseite: Die Behandlung ist enorm teuer. Sprengt ein solches Medikament das solidarische Gesundheitssystem? Rund 200'000 Franken kostet es offiziell pro Jahr, eine CF-Patientin bzw. einen CF-Patienten mit Trikafta zu behandeln. Zumindest ist dies der offizielle Preis. Es sind wiederkehrende Kosten, die das Schweizer Gesundheitssystem gemäss einer Kosten-Nutzen-Berechnung mit 160 Millionen Franken belasten. Ist es fair, so viel Geld für relativ wenige Betroffene auszugeben? Stimmt der offizielle Preis von Trikafta überhaupt? Welchen Hebel haben Gesundheitsbehörden wie das BAG, um sich gegenüber den Herstellern – im Fall von Trikafta die US-Firma Vertex – bei Preisverhandlungen zu behaupten? Mit BAG-Vizedirektor Thomas Christen und der Medizinethikerin Tanja Krones (Universität Zürich) spricht Irène Dietschi.

Das Medikament Trikafta hat das Leben unzähliger Menschen zum Besseren gewendet, die an der Erbkrankheit Cystische Fibrose leiden, unter ihnen die Schwestern Maurane (27) und Sarah (29). Doch nicht allen Betroffenen hilft Trikafta. Und: Das Medikament ist viel zu teuer. Die Kindheit von Maurane und Sarah aus dem solothurnischen Hägendorf ist ein permanenter Ausnahmezustand – Spitalaufenthalte, tägliches Inhalieren, Physiotherapie. Doch dann katapultiert das Medikament Trikafta die Schwestern in ein fast normales Leben. Das Glück hat seinen Preis: Maurane und Sarah sind traurig für jene, denen das neue Medikament nicht hilft. Und: Die Behandlung ist enorm teuer. Die Vergütung von Trikafta durch die Krankenkassen ist auf den 31. Januar 2025 befristet. Wie geht es weiter? Im Podcast zu hören sind: · Sarah Dincer und Maurane Wüthrich, Betroffene der Erbkrankheit Cystische Fibrose · Simon Wieser, Professor und Leiter des Instituts für Gesundheitsökonomie der Zürcher Hochschule für Angewandte Wissenschaften ZHAW · Thomas Christen, Vizedirektor Bundesamt für Gesundheit BAG Bei Fragen, Anregungen oder Themenvorschlägen schreibt uns: kontext@srf.ch Autorin: Irène Dietschi Host: Bernard Senn Produktion: Anna Jungen Technik: Serge Krebs

You've probably never heard of Trikafta — unless you or someone you love lives with cystic fibrosis. The drug has fundamentally changed cystic fibrosis care, extending life expectancy by decades. But the drug costs $326,000 a year — and requires people to be on it for life. Abdul reflects on the central challenge at promoting life-saving innovations that the people who need them can afford. Then he interviews Dr. Michael Boyle, President and CEO of the Cystic Fibrosis Foundation about the science behind Trikafta and the work to make it universally affordable. This show would not be possible without the generous support of our sponsors. America Dissected invites you to check them out. This episode was brought to you by: Marguerite Casey Foundation: Sign up for their new Summer School program at CaseyGrants.org/SummerSchool. Rhone: Upgrade your closet with Rhone and use AD to save 20% at https://www.rhone.com/AD.

They say the only constant in life is change, but what happens when the change you're given feels like a double-edged sword? In this episode, the boys sit down with Connie, a young woman whose life with Cystic Fibrosis has taken a sharp turn thanks to Trikafta. She shares the raw realities of navigating a new chapter where her body, mind, and future are all in flux. From the ripple effects of this life-altering drug to the unexpected burden of added years, Connie explores the challenges of redefining herself and seeking community in a world that suddenly feels both more hopeful and isolating.Catch the full video version of this episode on YouTube!Follow Sickboy on Instagram, TikTok and Discord

They say the only constant in life is change, but what happens when the change you're given feels like a double-edged sword? In this episode, the boys sit down with Connie, a young woman whose life with Cystic Fibrosis has taken a sharp turn thanks to Trikafta. She shares the raw realities of navigating a new chapter where her body, mind, and future are all in flux. From the ripple effects of this life-altering drug to the unexpected burden of added years, Connie explores the challenges of redefining herself and seeking community in a world that suddenly feels both more hopeful and isolating.Catch the full video version of this episode on YouTube!Follow Sickboy on Instagram, TikTok and Discord

Sibel Alkoc war 18 Jahre alt, als Ärztinnen und Ärzte endlich die wahre Ursache fanden für ihren chronischen Husten. Sie leidet unter Cystischer Fibrose, eine vererbte und unheilbare Stoffwechselerkrankung.Bis vor wenigen Jahren war Cystische Fibrose Garantin für einen frühen Tod. Auf 40 Jahre schätzten die Ärztinnen und Ärzte die Lebenserwartung von Alkoc. Doch dann kam ein neues Medikament auf den Markt, das alles veränderte. Heute geht man bei der 26-Jährigen aus Hindelbank von einer normalen Lebenserwartung aus – und dank des Medikaments kann sie ein ziemlich normales Leben führen.Wie ist das, wenn man sich plötzlich über ein langes Leben freuen kann? Wie verändert sich der Blick auf das Leben dadurch? Und was bedeutet «Glück» für Sibel Alkoc?Darüber spricht sie in einer neuen Folge des Berner Podcasts «Gesprächsstoff» mit Moderatorin Jessica King. 3 für 1: Lesen Sie drei Monate, bezahlen Sie nur einenGefällt Ihnen unser «Gesprächsstoff» Podcast? Entdecken Sie dann die besten Recherchen und Hintergründe unserer Journalist:innen. Speziell für Sie haben wir das ‘3 für 1' Angebot konzipiert: 3 Monate lesen, nur 1 Monat bezahlen. Gute Lektüre und viel Spass.https://info.tamedia.ch/gespraechsstoffHabt ihr Feedback, Ideen oder Kritik zu «Gesprächsstoff»? Schreibt uns an podcast.bern@tamedia.ch

Cambrey Vasconez White is the mother of toddler Rowland, who has Cystic Fibrosis. If you listened to our podcast with Vicky Maldonado, they have similar  struggles.  Cambrey is also working to find an equitable approach to rare mutations in the U.S. and Canada.  These two women connected, as you'll hear, because their sons share the same mutation.Rowland received  access to a CF modulator after a battle with her insurance company.  Her son's mutation is not on the FDA approved list for Trikafta…. even though there is proof that Trikafta will work on her son's mutation.To follow Cambrey go to @cfadvocacyYou can email her: cambreywhite@gmail.com Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

In our final episode, we explore Dorothy Andersen's legacy — what she left behind and how her work has lived on since her death. Describing her mentor's influence on her life and career, Dr. Celia Ores gives us a rare look at what Dr. Andersen was really like. We then turn to researchers, physicians, and patients, who fill us in on the many areas of progress that have grown out of Dr. Andersen's work. These major developments include the discovery of the cystic fibrosis gene, the tremendous impact of the drug Trikafta, and the lifesaving potential of gene editing techniques. We end the episode with an update on the effect Trikafta has had on the lives of many CF patients, who can now expect to live a normal life. 

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.Catch the full video version of this episode on YouTube!Follow Sickboy on Instagram, TikTok and Discord.

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.Catch the full video version of this episode on YouTube!Follow Sickboy on Instagram, TikTok and Discord.

Em maio de 2024, o modulador Trikafta® começou a ser dispensado no Sistema Único de Saúde (SUS) para as pessoas elegíveis e com prescrição médica para o uso. Mas quem é elegível e como ter acesso ao medicamento? Neste episódio do Conversando sobre a Fibrose Cística, conversamos com a fundadora e diretora executiva do Instituto, Verônica Stasiak, para trazer as respostas para essas e outras perguntas relacionadas ao tema. Para apoiar esse e outros projetos do Unidos pela Vida, basta acessar ⁠www.unidospelavida.org.br/doe⁠ e escolher a melhor forma de contribuir.

Very cool episode this week. Today I sit down with a true one of one in the podcasting world, Jeremie Saunders from CBC's Sickboy podcast, to explore his experiences as a man living with Cystic Fibrosis (CF), the most common fatal genetic disease affecting Canadian children and young adults. Jeremie shares how he learned of his diagnosis as a child and how it shaped his views on life after learning that he'd be unlikely to see his 35th birthday. He explores the nuances of living life faced with his mortality through the lens of mental health and provides an authentic look into the highs and lows associated with his disease and the subsequent release of a life-saving drug in Trikafta.Check out SickBoy on Apple PodcastFollow Jeremie on InstagramCheck out CF Canada's Podcast BreathlessFollow Life's a Wreck on InstagramFollow Kyle on InstagramPlease explore local mental health resources. You are worthy of the health that you seek. If you are in crisis please dial 9-8-8 for a national, free, 24/7 Suicide Crisis Line. Hosted on Acast. See acast.com/privacy for more information.

Jeremie always knew how he felt about having kids, and then everything changed. In episode 4 of Breathless, we dig into the nuanced considerations of starting a family when you have a life-shortening condition that could be inherited by your children. In the face of Trikafta, Jeremie faces the difficult task of reevaluating a choice he once felt absolutely certain about.Breathless is a Snack Labs Production in partnership with Cystic Fibrosis CanadaHost: Jeremie SaundersProducer: Jeremie Saunders, Taylor MacGillivaryEditor: Jeremie Saunders, Taylor MacGillivarySound Design: Donovan MorganMusic: Tom Fox, Donovan MorganArtwork/Design: Brian SteverFor more information on Cystic Fibrosis:https://www.cysticfibrosis.ca/Want more Snacks for your ears?https://www.wearesnack.io/ Hosted on Acast. See acast.com/privacy for more information.

The drug Trikafta has changed the lives of many Canadians living with cystic fibrosis. But in many other parts of the world, the drug is either not available — or if it is, it costs hundreds of thousands of dollars a year. That's why Cheri Nel, who is based in Johannesburg, is suing American pharmaceutical company Vertex over its patent and price tag.

In this episode, Amy Sylvis sits down with Gunnar Esiason, a prominent figure in the cystic fibrosis (CF) community. Gunnar delves into his remarkable journey, recounting his diagnosis at a young age and his family's commitment to raising awareness and funds for CF research through the Boomer Esiason Foundation. Despite facing challenges, Gunnar's passion for patient empowerment and early-stage drug development led him to pivotal roles in healthcare and advocacy.  Despite facing challenges with CF, Gunnar's resilience and determination led him to pursue higher education, ultimately earning an MBA and MPH. Throughout the conversation, Gunnar reflects on his life before and after receiving the breakthrough drug TRIKAFTA, describing what it was like taking his first dose. He shares personal insights into balancing work, family, and supporting the CF community, acknowledging the interconnectedness of these aspects in shaping his abundant life.  His story serves as an inspiration for all – showcasing the power of perseverance and advocacy in the face of adversity. More about Gunnar: Gunnar Esiason is a cystic fibrosis and rare disease patient leader, who is passionate about early-stage drug development, patient empowerment and health policy. He is the head of patient engagement at RA Capital's venture group, RA Ventures. Professionally, he developed a patient engagement platform for a medical nutrition company, built a venture philanthropy practice at the Boomer Esiason Foundation which has yielded more than $160 million raised for the fight against cystic fibrosis since he was diagnosed with the disease in 1993. He has consulted on clinical trial development, a real-world evidence population health study, and a cystic fibrosis-specific mental health and wellness screening tool. His blog has amassed nearly 1 million page views since 2015. His podcast, the State of Health, is available on all streaming platforms. Gunnar holds an M.B.A. from the Tuck School of Business at Dartmouth, where he was a Wilson Scholar and received the Julia Stell Award, an M.P.H. from the Dartmouth Institute for Health Policy & Clinical Practice, and a B.A. from Boston College. His health policy opinions have been featured in the Wall Street Journal, USA Today, The Hill, and STAT News. Connect with Gunner: esiason.org twitter.com/g17esiason Connect with Amy Sylvis: sylviscapital.com sylviscapital.com/webinar  linkedin.com/in/amysylvis

Canadian, Vicky Maldonado is the mother of a young boy living with a rare genetic form of CF. Sebastian is 6 years old, and a twin. The road to diagnosis was challenging. Sebastian was diagnosed with two rare CF genes after repeated respiratory infections and two hospitalizations. “We were told that Sebastian likely didn't have CF because he's “not White”— his parents are Canadian-born Latinos from Ecuador. Though CF affects all races and ethnicities, there's still a common misconception among health-care providers that it is a predominantly White disease.”Vicky and her husband were devastated to learn that their son would not have access to the life-changing and life-saving drug Trikafta because he has two rare mutations. Due to small populations in rare mutations, clinical trials are often not feasible. Other countries are using in vitro data to provide access to those with rare and ultra-rare mutations while approximately 200 Canadians with CF are being left behind.This is not a new problem in Canada, the pathway to access to new and innovative therapies is fraught with challenges. A broader regulatory approach is needed to support implementation of the National Strategy for Drugs for Rare Diseases, and cystic fibrosis is an example of this need. There are hundreds of disease-causing mutations, some with only a handful of patients worldwide. Health Canada can improve access to rare disease medications like Trikafta by using patient and laboratory in vitro data and by developing a regulatory model that permits bulk approvals of gene mutations that can respond to precision medicines like Trikafta. Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Joining us this week is long-time friend of Gavin's, Nick Laing, to talk about his struggles with cystic fibrosis, his upcoming clothing line, and working on music with Ukdian (Gavin's band) follow Nick on Instagram @withinanickoftrikafta

In this episode, we have the pleasure of chatting with Ell, who shares her remarkable journey through four unique birth stories. As a midwifery student, Ell's exposure to homebirth during a placement sparked a profound realisation – she wanted to bring her children into the world in the comfort of her own home. However, her first pregnancy took an unexpected turn when a scan revealed issues with her son's bowel, leading to Ell and her partner testing positive as carriers of Cystic Fibrosis (CF). As a result, complications arose, preventing Ell from having a homebirth for her first child.  Undeterred, Ell went on to successfully birth her next three babies at home, embracing the empowering experience of homebirth.  Links:Cystic Fibrosis info - https://www.cysticfibrosis.org.au/about/ Support the show@homebirthstoriesaustralia Please be advised that this podcast may contain explicit language. Listener discretion is advised.The information, statistics, and research presented in this podcast are for informational purposes only and are not intended to constitute or replace medical or midwifery advice. All information discussed can be found online and is provided in the links in the show notes. It is always recommended to conduct your own research and make informed decisions. We advise you to discuss any topics or concerns with your healthcare provider. While we strive to incorporate the most up-to-date research in our episodes, we do not warrant or guarantee the accuracy of the information discussed on the show.

Bernie Martin is a Writer, Creative Consultant and, most importantly, Mother of a CF Fighter. After 15 years working as a Copywriter and Creative Director in some of Ireland's top advertising agencies, she started her own consultancy called The Salty Pen in 2018. This move was born out of a desire to have more flexibility around caring for her little lady with CF, who she describes as her muse, her strength, her drive, her everything! Bernie has written about the challenges facing CF families on her blog My Little Miss Salty, and she has written for The M Word and MummyPages. She has worked on a voluntary basis as a CF patient advocate in CHI Temple Street and as a campaigner during the #YesOrkambi campaign in 2016/17, with the support of Rothco, the advertising agency she worked with at the time. She has been a speaker at the Cystic Fibrosis Ireland Conference and at the new parent information day in Temple Street, as well as featuring in Humans of Dublin by Peter Varga.Bernie and her daughter, Eva, recently collaborated with the University of Notre Dame in the 100th episode of their long running series, ‘What would you fight for?' In this case, the fight is for new Cystic Fibrosis treatments. Bernie and her husband Dave live in Dublin, Ireland.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en

Pharmac's board is backing the CEO and bringing in external contractors to help implement a plan to fix the organisation's internal culture. I get it, people make mistakes, we all understand that, but in my eyes, Pharma's leadership has made a couple of massive errors in recent months. The first — if you cast your minds back was the rollout of the Trikafta funding announcement. I personally just thought it was incredibly inappropriate that Pharmac appeared to turn the whole thing into a made-for-TV moment. Medicines funding is so sensitive. Pharmac is literally making decisions about peoples' lives. The whole Pharma model is supposed to remove emotion from the equation as much as possible. So think about what making a made-for-TV Oprah-style moment means in the context of drug funding and medicines funding. It feels really, really icky to me and in my view, it only incentivises pharmaceutical companies to launch really big, emotional PR campaigns in order to get their medicines funded regardless of how much they cost. Which ultimately undermines the whole purpose of Pharmac's model. But not only that, they appeared to very deliberately mislead journalist Rachel Smalley when she found out about the funding decision ahead of their PR moment and she started making calls. And then the pièce de résistance: internal emails showed senior leadership making incredibly unprofessional comments about Rachel Smalley. I just do not understand how you can rise to a senior leadership position in an agency such as Pharmac and not realise that your emails can be made public. What does it say about the judgment of those leaders? Not just the comments, but that they made them in writing. The external contractors might help to change the culture within Pharmac. Internally, they might be successful in making some big cultural changes. But when it comes to an organisation like Pharmac, public perception matters just as much, if not more. And this won't fix it.See omnystudio.com/listener for privacy information.

This week the boys are delving deep into the jaw-dropping findings of a recent study on near-death experiences, where the line between life and the great beyond gets a little blurry. A recent study shows how patients displayed brain activity in the delta, theta, alpha, and beta ranges, indicating possible conscious activity over 60 minutes AFTER their heart stopped! Maybe ghosts are real? Brian showed up with a Gen Z haircut but he's behind in the race for the most trendy 'do. One rapper from Mexico had hooks implanted into his head so he could rock a full head of bling… and to be quite honest, it looks pretty sick. Trikafta won a big ol' prize for extending Jer's life! Thai food is delicious but one dish may kill you with one bite and for WHAT THE HELLTH!?! The boys cover an insanely shocking story of one woman who's blood was so toxic that it landed multiple healthcare providers in the hospital after trying to save her life! Join the post-episode conversation over on Discord! https://discord.gg/expeUDN

This week the boys are delving deep into the jaw-dropping findings of a recent study on near-death experiences, where the line between life and the great beyond gets a little blurry. A recent study shows how patients displayed brain activity in the delta, theta, alpha, and beta ranges, indicating possible conscious activity over 60 minutes AFTER their heart stopped! Maybe ghosts are real? Brian showed up with a Gen Z haircut but he's behind in the race for the most trendy 'do. One rapper from Mexico had hooks implanted into his head so he could rock a full head of bling… and to be quite honest, it looks pretty sick. Trikafta won a big ol' prize for extending Jer's life! Thai food is delicious but one dish may kill you with one bite and for WHAT THE HELLTH!?! The boys cover an insanely shocking story of one woman who's blood was so toxic that it landed multiple healthcare providers in the hospital after trying to save her life! Join the post-episode conversation over on Discord! https://discord.gg/expeUDN

Bean Corcoran, and Will Corcoran.  Mother and son.I met Bean Corcoran when we were doing a science and innovation campaign, and we became friends!  I learned a little bit about her son Will, who has CF.  Bean is very involved in the CF community.  She is the President of the CFF Connecticut Chapter and the Bridge of Hope Communications Director volunteer.  We did a podcast in the past about the Bridge of Hope and what they do, so feel free to go back and listen to that if you want to find out more. She is also a Patient Family Partner and Quality Improvement Leader on the Pediatric CF Care team at Columbia Presbyterian Hospital in New York City since 2017. Bean is also an artist who paints endangered animals in oils and works in pottery. Bean and her husband live with their dog Rosie.Today we're talking about Bean and her son Will. Will cannot take the CF modulator, and we discuss what it does to you mentally and physically.  Will is 26-years old and lives in Chicago. Will was diagnosed with CF at 3 months old, received a liver transplant at age 15, and is unable to benefit from modulators due to his mutations. Will does four breathing treatments a day, rarely has more than two weeks without antibiotics, and battles hemoptysis. Will has been seen at five different CF centers. He is also an advocate. He works on family advisory boards, speaks with younger CFers, and currently sits on the Adult Advisory Council for the CFF. Will enjoys time outside with his dog Stanley, watching Philadelphia sports, and works as a fundraiser for an environmentally focused non-profit.I am grateful for Bean, (which is her nickname) and to her son Will for being so honest about how CF has impacted their lives.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en

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

Annaka Haynes is a nursing student who has had Cystic Fibrosis since she was 6 weeks old. Trikafta developed by Vertex Pharmaceuticals was first approved by the FDA on October 21, 2019. This treatment is a triple combination regimen for cystic fibrosis patients starting at ages 2 years and older who have at least one F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene or a mutation in the CFTR gene that is responsive to Trikafta based on in vitro data.

It's 2023, surely now people of color are correctly being diagnosed with cystic fibrosis right?  Nope.  They are still underdiagnosed.  We hear about it happening in low income countries, but it's happening right here in the USA. Rachel Alder was diagnosed barely 5 months ago, at age 26.  She was misdiagnosed until January 2023. Rachel was born before newborn screening could detect CF. And, because not all mutations are under represented in testing, her diagnosis would still most likely have been missed. We have to change this.Rachel Alder today, or Rae as she likes to be called has been an advocate her entire life. Rachel, who is African American. It is still unbelievable to those of us advocating and raising awareness about the disparity in diagnosis in people of color, it is still happening.  As a reminder, anyone, regardless of race can be diagnosis with cystic fibrosis.  The number of people diagnosed with CF is certainly higher than is what currently reported.  Rae is a transracial adoptee, which means she was adopted by parents who are a different race.  Rae identifies as queer, and a full time CF Warrior.In the beginning of her career, she worked on diversity victim advocacy with survivors of sexual assault, human trafficking, and domestic violence. After her January CF diagnosis, she started focusing on patient advocacy, and specifically on health equity. Rae herself overcame racial bias, health disparity and a decline in her own health until her diagnosis.National Organization for African American's with cystic fibrosis: https://noaacf.orgChildren's Organ Transplant Association: https://cota.orgBonnell Foundation CF Master Class: https://cfmasterclass.orgBonnell Foundation website: https://thebonnellfoundation.orgEmail: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/enInformation about Institute for Economic and Clinically Review (ICER): https://www.engagecf.org

We'll be taking a break in May, June, and July while our host is on maternity leave. See you again in August!   This week on Pharm5: Vowst (SER-109) for recurrent C Diff Trikafta for CF in 2+ years Mounjaro for weight loss in diabetes Qalsody accelerated approval for ALS J&J talc baby powder settlement   Connect with us! Listen to our podcast: Pharm5 Follow us on Twitter: @LizHearnPharmD   References: FDA approves first orally administered fecal microbiota product for the prevention of recurrence of Clostridioides difficile infection. U.S. Food and Drug Administration. https://bit.ly/3Li7Cue. Published April 26, 2023. Accessed April 27, 2023. Feuerstadt P, Louie TJ, Lashner B, et al. Ser-109, an oral microbiome therapy for recurrent clostridioides difficile infection. New England Journal of Medicine. 2022;386(3):220-229. doi:10.1056/nejmoa2106516 Vowst [package insert]. Cambridge, MA: Seres Therapeutics, Inc.; 2023. FDA approves Trikafta for children ages 2 through 5 years with certain CF mutations. Cystic Fibrosis Foundation. https://bit.ly/44dP3QD. Published April 26, 2023. Accessed April 27, 2023. Lobo A. FDA expands its approval of Trikafta to cover younger children. Cystic Fibrosis News Today. https://bit.ly/3oSuhG0. Published April 27, 2023. Accessed April 27, 2023. CFTR modulator therapies. Cystic Fibrosis Foundation. https://bit.ly/3Az4epZ. Accessed April 27, 2023. Lilly's tirzepatide achieved up to 15.7% weight loss in adults with obesity or overweight and type 2 diabetes in surmount-2. Eli Lilly and Company. https://bit.ly/3VkD9AE. Published April 27, 2023. Accessed April 27, 2023. Galvez-Jiminez N, Goyal NA, Cudkowicz ME. Disease-modifying treatment of amyotrophic lateral sclerosis. UpToDate. http://www.utdol.com. Updated May 17, 2022. Accessed May 19, 2022. Liu A. FDA awards Biogen's ALS Drug Qalsody an accelerated approval, following its experts' feedback this time. Fierce Pharma. https://bit.ly/3VaVwrC. Published April 25, 2023. Accessed April 27, 2023. FDA approves Qalsody™ (Tofersen) as the first treatment targeting a genetic cause of ALS. PR Newswire: press release distribution, targeting, monitoring, and marketing. https://bit.ly/3ADSe6N. Published April 25, 2023. Accessed April 27, 2023. Qalsody [package insert]. Cambridge, MA: Biogen, Inc.; 2023. J&J to retain all talc-related liabilities from litigation in US, Canada. Reuters. https://bit.ly/3HjTS10. Published April 27, 2023. Accessed April 27, 2023. Spector M, Knauth D. J&J unit files for second bankruptcy to pursue $8.9 billion talc settlement. Reuters. https://bit.ly/426xfoY. Published April 5, 2023. Accessed April 27, 2023.

"Sorry kid, you're not sick enough for us anymore." This week the fellas discuss the Make-A-Wish Foundation's controversial decision to change their policy on cystic fibrosis. Apparently, medical advances have made it possible for these patients to live longer, which means they don't automatically qualify for a wish anymore. Also, did you know a year's worth of Trikafta could be made as cheap as $5700? Yet some poorer countries aren't being given access to the drug and it's killing young folks with CF as a result. Why are orcas killing sharks and removing their livers with surgical precision? Maybe Liver King was right, Liver is king. Get ready to yawn… seriously though, the guys probably yawned 8 times between them during the show. Finally for WHAT THE HELLTH!? Gym bros are eating dog food for gains. It's disgusting. Join the post-episode conversation over on Discord! https://discord.gg/expeUDN

"Sorry kid, you're not sick enough for us anymore." This week the fellas discuss the Make-A-Wish Foundation's controversial decision to change their policy on cystic fibrosis. Apparently, medical advances have made it possible for these patients to live longer, which means they don't automatically qualify for a wish anymore. Also, did you know a year's worth of Trikafta could be made as cheap as $5700? Yet some poorer countries aren't being given access to the drug and it's killing young folks with CF as a result. Why are orcas killing sharks and removing their livers with surgical precision? Maybe Liver King was right, Liver is king. Get ready to yawn… seriously though, the guys probably yawned 8 times between them during the show. Finally for WHAT THE HELLTH!? Gym bros are eating dog food for gains. It's disgusting. Join the post-episode conversation over on Discord! https://discord.gg/expeUDN

For years, a diagnosis of cystic fibrosis has often meant an early death for patients. This week, Cystic Fibrosis Canada released its annual data report this week for 2021. A new drug, Trikafta, is keeping patients out of hospitals and off of transplant lists.The Globe's health reporter Kelly Grant explains why doctors are now talking about cystic fibrosis as a disease in transition and the hope of a new future for thousands of patients.Questions? Comments? Ideas? Email us at thedecibel@globeandmail.com

In this week's edition of Midweek Mediawatch, Hayden Donnell talks to Karyn Hay about a media tussle with Pharmac, a so-called 'trainweck' interview by the broadcasting minister and two interesting Media Council decisions.

Attorney Jen Weber is 49 years old and waiting to have her third lung transplant. Weber lived in Indiana until this third transplant, when she had to move to Durham, North Carolina to be near her transplant hospital: Duke University Health.  Weber also started a non-profit five years ago that meets inpatient and outpatient needs ( for example: pajama pants, slippers, cell phone chargers).  Weber worked for the Indiana Supreme Court for 16 years (in personal and operations) while going through her first transplant.   Weber is trying to help us understand the emotional and financial toll a transplant can take on a person, and their family.  As she waits for her third transplant Weber is in need of a living kidney donor.  Anyone interested in getting tested can call: 919.613.777.Something we did not talk about in the podcast is her love of music! Weber is a cellist! She still plays with the Carmel Symphony.Duke kidney donation application:https://redcap.duke.edu/redcap/surveys/?s=9EHPAAPMFMDonate to C.O.T.A for Jen's transplant expenses: https://cota.org/campaigns/COTAforJenWarriorComfort Finders Foundation: https://comfort-finders.orgFor more information on The Bonnell Foundation find us at:  https://thebonnellfoundation.org/Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/Thanks to our sponsors:Vertex: https://www.vrtx.comGenentech: https://www.gene.com/Viatris:  https://www.viatris.com/enThe original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find him on Facebook here: https://www.facebook.com/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts: https://jagindetroit.com/

Spike speaks to Lisa Burns from Cystic Fibrosis NZ about Pharmac's decision to fund Trikafta, a "life saving" drug for people living with cystic fibrosis. 

Today on The Wire for Rāhina Monday: Spike speaks to Lisa Burns from Cystic Fibrosis NZ about Pharmac's decision to fund Trikafta, a "life saving" drug for people living with cystic fibrosis, and Jodi Johnston from Campaign for Better Transport about the government's new $350m transport funding package. Arno speaks to Eugenie Sage about the Three Waters Reform and Labour's decision to remove the anti-privatisation clause from the legislation, and Professor James Hollings about the announcement of a "fair pay" law between news aggregators like Google and local news organisations here.

Pharmac has reached a provisional agreement to fund Trikafta, a cystic fibrosis drug which has been found to extend life expentancy by 27 years. Cystic fibrosis is a terminal condition that affects about 540 people in New Zealand. Previously, the drug cost patients $330,000 per year, putting it far out of reach for most.  Cystic Fibrosis NZ chief executive Lisa Burns spoke to Corin Dann.  

Pharmac has reached a provisional agreement to fund a cystic fibrosis drug which has been found to extend life expectancy by 27 years. Cystic fibrosis is a terminal condition that affects about 540 people in New Zealand. Ed Lee is a cystic fibrosis patient who has managed to self-fund the treatment, but has campaigned for Pharmac to fund Trikafta.  He spoke to Corin Dann.   

Pharmac says it's pleased to be ready to consult on a drug the cystic fibrosis community's been after for a long time. A provisional agreement's been made between Pharmac and Vertex to fund the drug Trikafta for those with the condition aged six and over. The drug buying agency estimated it could give those people up to 27 more years of full health when compared with supportive care. Pharmac Operations Director Lisa Williams told Mike Hosking more funding for Pharmac was announced in this year's budget. She says that has made a difference and they've been able to fund a lot more medicines this year. LISTEN ABOVESee omnystudio.com/listener for privacy information.

Zachariah Churchill is a Canadian MLA from Nova Scotia. He serves as a member of the Nova Scotia House of Assembly for Yarmouth. During his tenure as health minister, Zach committed to providing drug coverage for Trikafta, a life-saving drug for people with cystic fibrosis. In opposition, Zach advocated for this commitment to be followed through and was successful. Cystic fibrosis patients in Nova Scotia began receiving coverage on November 18, 2021. This week Zach joins the fellas to give them an inside look at what it means to be the health minister.

Zachariah Churchill is a Canadian MLA from Nova Scotia. He serves as a member of the Nova Scotia House of Assembly for Yarmouth. During his tenure as health minister, Zach committed to providing drug coverage for Trikafta, a life-saving drug for people with cystic fibrosis. In opposition, Zach advocated for this commitment to be followed through and was successful. Cystic fibrosis patients in Nova Scotia began receiving coverage on November 18, 2021. This week Zach joins the fellas to give them an inside look at what it means to be the health minister.

CF and Colon cancer, the risks are higher than you may be aware.  Anna Payne is 35 years old and was diagnosed with stage 4 colon cancer a year ago.Anna is advocating to get colon cancer screening down to age 25 for people with CF.  She's in the fight of her life, and she's fighting for others. I hope this podcast reaches CF families that need to hear this critical message, and that it makes you an advocate. Anna's Foundation: http://bccfa.orgAnna's email:buckscountyCfalliance@gmail.com Anna's Public Service Announcement: https://mail.google.com/mail/u/0/#inbox/KtbxLxGvbxbndnpNLnVrlGQpTHbCpnHxhg?projector=1CFRI's colon links: : https://www.cfri.org/acolonscopycansaveyourlife/Cystic Fibrosis Foundation information page:  https://www.cff.org/managing-cf/about-colorectal-cancer

Our Angel Number Podcast! FGF 122 on July 22, 2022. This episode is all about alignment. The forecast today calls for a 10% chance rocket debris falling from the sky and killing you. Trikafta is now approved for kids 6-11 in Nova Scotia! The countries youngest recipient of an artificial heart is cute as a button. A sex toy a day keeps the doctor away... just gotta find a way around those pesky fun toy laws in Alabama. Uber drops the ball for disabled customers and pays the price. UPS trucks are a death trap. For WHAT THE HELLTH?! We talk about why a certain tree this time of year smells like cummy. Yummy or Yuck? Join the post-episode conversation over on Discord! https://discord.gg/expeUDN

Our Angel Number Podcast! FGF 122 on July 22, 2022. This episode is all about alignment. The forecast today calls for a 10% chance rocket debris falling from the sky and killing you. Trikafta is now approved for kids 6-11 in Nova Scotia! The countries youngest recipient of an artificial heart is cute as a button. A sex toy a day keeps the doctor away... just gotta find a way around those pesky fun toy laws in Alabama. Uber drops the ball for disabled customers and pays the price. UPS trucks are a death trap. For WHAT THE HELLTH?! We talk about why a certain tree this time of year smells like cummy. Yummy or Yuck? Join the post-episode conversation over on Discord! https://discord.gg/expeUDN

This is Lauren's story. One filled with bravery, strength, thorns and roses. Cystic Fibrosis may be a character in her arc - but she is much more than that. Finding an outlet in dance, Lauren has worked tirelessly towards her craft and fulfilled her goal of SYTYCD (S16). One look at her doing what she loves and it is undeniable. We discuss her journey growing up as a CF'er, writing her memoir, meeting Five Feet Apart's star & director, what Trikafta has done for her and her advocacy for the CF and Make a Wish Foundation. See below for links to donate and support the cause! To donate to Lauren's CFF Team: https://fightcf.cff.org/site/TR/GreatStrides/32_Florida_Orlando?team_id=104209&pg=team&fr_id=9009 For more information: www.cff.org Make a Wish Foundation: https://wish.org/ Breathe Easy merchandise: https://breathe-easy-2.creator-spring.com/ - Breathing Easy Through 65 Roses memoir: https://www.amazon.com/Breathing-Easy-Through-Roses-adversity/dp/B09MCJZGTG - Blooming Roses podcast: https://podcasts.apple.com/us/podcast/blooming-roses/id1530425806

COVID finally got Jer. Although it's the zeta cuck variant. Zero symptoms. Either that or Trikafta is unknowingly one of the world's most impressive COVID therapeutics... not really. No misinformation here. Brian is full of hot takes. Tune in to hear mushrooms speak & to see the actual size of a pregnant uterus. Toby is a little CF warrior. Literally. The kid lives for punching other children in the face. The U.S. is addicted to cremation. Short guys can now get the long end of the stick with a leg-lengthening surgery. It's all about confidence fellas! Finally in this week's edition of WHAT THE HELLTH!? One poor man injected insulation foam into a place where really you shouldn't be injecting anything. Spoiler alert it has to do with his Pee Pee and he will never be able to use it again! *Join the post-episode conversation over on Discord! https://discord.gg/expeUDN

Cystic Fibrosis is the most common life-limiting fatal genetic disorder. We're going to show you the science behind the leading CF drug Trikafta and share news of a new trial investigating gene therapy.