Best Trikafta Podcasts (2025)

1
The Trikafta Experience 1:00:21

16h ago1:00:21

1:00:21

In this powerful episode, we sit down with Caleb and Tiffany Remington (@ustheremingtons) to explore life beyond Trikafta, the groundbreaking CFTR modulator that has transformed the CF landscape for roughly 90% of patients. Caleb, who lives with cystic fibrosis, and Tiffany, his wife and caregiver, share their honest perspective on navigating this …

1
Navigating Daily Life with CF 55:21

15h ago55:21

55:21

In this powerful episode of Our Fight to Breathe, host Caleigh Haber sits down with her close friend Nick Di Brizzi Jr., a double lung and kidney transplant recipient who has turned his journey with cystic fibrosis into a mission of hope and service. Nick, an actor, athlete, and founder of the Breathe Like a Boss Foundation, shares nearly a decade …

1
Cystic Fibrosis’s Impact on Mental Health 1:02:10

15h ago1:02:10

1:02:10

In this powerful episode of Our Fight to Breathe, host Caleigh Haber welcomes KC White, Chair of the Board of Trustees at the Cystic Fibrosis Foundation and a leading voice in the CF community. KC, who holds a Master's degree in Applied Positive Psychology from the University of Pennsylvania, brings over two decades of advocacy experience and deep …

1
The Importance of Specialized CF Care 53:29

16h ago53:29

53:29

In this episode, host Caleigh Haber interviews her personal CF physician, Dr. Patricia Eshaghian, Director of the Adult Cystic Fibrosis Program at UCLA Health. Dr. Eshaghian shares her journey into CF care and explains why specialized, accredited CF centers are crucial for patient outcomes. With over 20 years of experience, she emphasizes how compr…

1
Fitness and Nutrition in Managing CF 52:16

16h ago52:16

52:16

Join host Caleigh Haber as she welcomes Ben Mudge, a fitness coach, cystic fibrosis advocate, and author of the upcoming book Fitness Without Limits. Born with CF and diagnosed at three days old, Ben has transformed his approach to health from a military-influenced upbringing into a thriving 13-year coaching career helping others embrace their pote…

1
Advocacy in Action 47:47

16h ago47:47

47:47

In this powerful episode of Our Fight to Breathe, host Caleigh Haber sits down with Emily Kromar-Grolinkoff, founder of Emily's Entourage and a nationally recognized advocate for cystic fibrosis research. Diagnosed with CF at six weeks old, Emily has transformed her personal journey into a global movement, building a groundbreaking nonprofit that a…

1
CF Caregiving: A Husband’s Perspective 1:13:30

16h ago1:13:30

1:13:30

In this deeply personal episode, host Caleigh Haber sits down with her husband Bryan Takayama to explore the often-overlooked perspective of CF caregivers. Bryan, an entrepreneur and co-founder of Notion State, shares his decade-long journey from meeting Caleigh one year post-transplant to becoming her primary caregiver through organ rejection, a s…

1
Navigating the Complexities of the Healthcare System 45:09

16h ago45:09

45:09

In this episode of Our Fight to Breathe Podcast, host Caleigh Haber Takayama sits down with Aaron Stocks, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program. Aaron brings a unique dual perspective—he both lives with cystic fibrosis and professionally helps others navigate the complex healthcare syst…

1
Coping with Grief and Keeping the Legacy Alive 44:25

16h ago44:25

44:25

In this deeply moving episode, host Caleigh Haber sits down with Diane Shader Smith, a powerful advocate in the cystic fibrosis community and author whose daughter Mallory lived with CF until age 25. Diane has channeled her grief into meaningful advocacy work, sharing Mallory's story through the acclaimed books "Salt in My Soul" and "The Diary of a…

1
Intersecting Identities: Coming Out and Living with CF 44:36

16h ago44:36

44:36

Episode Description: In this powerful episode of Our Fight to Breathe, host Caleigh Haber sits down with Brandon Wright, a 37-year-old licensed social worker and certified dementia practitioner living with cystic fibrosis. Brandon shares his deeply personal journey of navigating identity at the intersection of chronic illness and being a member of …

1
Life Post Transplant and the Transplant Games 1:02:48

16h ago1:02:48

1:02:48

Join host Caleigh Haber as she sits down with Matt De Fina, a two-time double lung transplant recipient, father, athlete, and advocate who has earned 37 medals competing in the Transplant Games of America and World Transplant Games. Matt's journey from end-stage cystic fibrosis to becoming a competitive athlete showcases the incredible possibilitie…

1
Built to Fight: The Woman Who Raised Me 59:35

16h ago59:35

59:35

In this episode, host Caleigh Haber welcomes her mother, Lizeth Bosch Haber, as her first guest to share the remarkable journey that shaped both their lives. As Caleigh's primary caregiver and fiercest advocate, Lizeth provides an intimate look into the realities of raising a child with cystic fibrosis, from navigating the initial diagnosis and eme…

1
Personalized Mission: The Rosenau Family Foundation story 34:10

8d ago34:10

34:10

"Oh, the people you’ll meet, and the places you’ll go..." That classic Dr. Seuss line couldn’t have been more true when I found myself at a rare disease conference, taking with Dr. Gabriel Cohn. A quiet presence with a resume that reads like a roadmap through the last 30 years of rare disease breakthroughs, Dr. Cohn is the kind of person who remind…

1
Introducing a Cystic Fibrosis Podcast 1:43

11d ago1:43

1:43

Welcome to Our Fight to Breathe, a podcast amplifying voices from the chronic illness and rare disease community. Hosted by Caleigh Haber, who lives with cystic fibrosis and has undergone two double lung transplants, this show explores the realities of life with serious health conditions—the triumphs, grief, medical complexities, and human stories …

1
Costco to Connection: Magazine to Mic with Michelle Glogovac 47:44

22d ago47:44

47:44

From Costco to Connection: Podcast Advice That Changed Everything When I spotted a feature on podcasting in The Costco Connection, I was excited. When I saw Michelle Glogovac featured? I knew I had to reach out. That decision turned into one of the best moves I’ve made for growing my podcast. Michelle, THE Podcast Matchmaker®, publicist, and author…

1
Voices of Care: A Live and Unfiltered Conversation 1:16:39

29d ago1:16:39

1:16:39

Live from Mix and Mingle Education Day: A Powerful Conversation with Caregivers In this deeply moving live episode recorded at the Mix and Mingle Education Day, we brought together a powerful group of caregivers—grandparents, parents, stepparents, dads, and friends—for a heartfelt discussion about the emotional journey of caring for a loved one wit…

1
Obesity in CF: A New Challenge in a Healthier Future 38:12

1M ago38:12

38:12

Cystic Fibrosis and obesity? Until recently this has not been a topic of conversation for the CF community. The reason for obesity in the CF community is better health and longer lives, so the concern is now a reality. University of Michigan CF doctor, Carey Lumeng is researching the issue. As he says in this podcast, researchers have a lot to lear…

1
70 years strong: The Luanne McKinnon story. 1:03:30

1M ago1:03:30

1:03:30

A 70-year-old person with cystic fibrosis. It’s a phrase that wasn’t just uncommon a few decades ago—it was virtually unheard of. When Luanne McKinnon was diagnosed in 1969 at just 13 years old, doctors told her parents she might live to be 19 years old. Today, Luanne stands on the edge of her 70th birthday—a milestone that not only redefines possi…

1
Live Fearlessly: Jacob Venditti 31:54

2M ago31:54

31:54

Eight miles. Two friends. One cause. In this inspiring episode, Jacob Venditti opens up about his life with cystic fibrosis, offering candid updates on his health and the challenges he faces as he prepares for a lung transplant. He emphasizes the vital role of community support and shares how his work with the Live Fearlessly Foundation fuels his m…

1
From Bulky to Breakthrough: The Future of Airway Clearance 27:37

2M ago27:37

27:37

From Clunky to Cutting-Edge: The Evolution of Airway Clearance with Nicole Dunn When our daughters first received their vest machines, they felt like they weighed a hundred pounds and had to be plugged into the wall. The vests didn’t fit well—riding high in the armpits and leaving much to be desired in comfort and function. Fast forward 25 years, a…

1
Milestones, Medicine, and the CF Community with Siri Vaeth 53:36

3M ago53:36

53:36

CFRI’s Executive Director, Siri Vaeth is sunshine to me. She’s a dear friend. We met after Siri took on her role with the Cystic Fibrosis Research Institute. I consider Siri a dear friend, and a mentor. Siri is truly among the smartest people I know. She is an advocate for her daughter Tess, who has CF, and is an incredible advocate for the CF comm…

1
Aaron Trumm: living his best life! 45:23

3M ago45:23

45:23

I love that I was able to bump into Aaron Trumm via an email. He reached out to check in about our scholarship program for college. We only award grants to undergrad students, but I was intrigued by all I learned about him. Aaron has CF, he is post-transplant, he started a recording label, he plays the piano and wraps, And he worked with the man kn…

1
Bob Coughlin, CF Dad: from Congress to Science 45:50

4M ago45:50

45:50

CF Dad Bob Coughlin see's a cure in the future for his son, and all of our kids. His high energy in this podcast is contagious. In this conversation, Laura Bonnell and Bob Coughlin discuss the journey of Bob's son, Bobby, who has cystic fibrosis. They explore the advancements in treatment, the importance of advocacy, and the intersection of policy …

1
Michael Armstrong, wise beyond his years 26:45

4M ago26:45

26:45

Michael Armstrong is a 25-year-old pre-law student. He loves to read, paint, play card games and video games. He was diagnosed with CF as an infant. We’re going to talk about his CF journey and how life took a turn when he was being evaluated for a lung transplant in 2023 and 2024. Michael was featured in the 2025 Portraits of cystic fibrosis calen…

1
Life after the death of a child to CF 42:53

4M ago42:53

42:53

If you lose a child to CF, what does that do to parents? To their identity? And their place in the CF community. These are hard discussions to have, but for a couple years now Peggy Hawkins has want to share her story on this podcast. Peggy talks about the toll waiting for a transplant takes on a family. One of the issues was that one of them alway…

1
Advocate, Amanda Boone 1:05:19

5M ago1:05:19

1:05:19

Saving yourself by way of advocacy. Living with cystic fibrosis podcast host, Laura Bonnell talks to CF advocate, Amanda Boone about the fight that grew from a threat to her medications in Colorado. Amanda has led the way against the Prescription Drug Affordability Board (PDAB). Amanda, who has CF, was struggling prior to 2019 because her health wa…

1
BreatheStrong CF 44:09

5M ago44:09

44:09

I have known Becky Penuel for many years. Becky used to run Miles for cystic fibrosis and then merged her nonprofit with Brian Callanan’s nonprofit, CF Life Fitness. After the merger, the nonprofit name is now: BreatheStrong. Becky is the Executive Director and was not able to join us today but, her Director of Operations is with us . Shawna Gray i…

1
NonProfit Spot, Heather Carmona 38:25

5M ago38:25

38:25

The NonProfit Spot: a wealth of resources and classes about how to grow your board, fundraise and make strategic decisions that will change the trajectory of your Foundation for the better. They have an excellent newsletter too. Heather Carmona, the Managing Director (and co-founder) of NonProfit Spot is a great friend and I am honored to share all…

1
Rare Disease Diversity, Jenifer Waldrop 34:48

6M ago34:48

34:48

I encourage everyone to attend conferences when you can. I meet the most interesting experts in the field of the nonprofit world. From scientists, to pharma, to other nonprofit execs like me. I was thrilled to meet Jenifer Waldrop. She joined the Black Women’s Health Imperative as the Executive Director of the Rare Disease Diversity Coalition (RDDC…

1
Melissa Yeager, Claire's Place Foundation 44:58

6M ago44:58

44:58

Melissa Yeager, Executive Director and Co-Founder of Claire’s Place Foundation Since the planning stages of Claire’s Place Foundation, Melissa has spent countless hours working for the cause and, of course, raising her two children, Claire (the foundation’s namesake) and Ellie. With many years’ experience in project management and event planning, s…

1
Rock Star, Emily Schaller: one on one. 30:39

7M ago30:39

30:39

Emily Schaller, 42, is a heroine with one goal in mind, to Rock CF. A lot of laughs on this podcast with my friend Emily! She talks about her health, the Foundation, new and old legislation and what's coming up in 2025! Equal parts spark, wit and humor, Emily is claiming her victories against cystic fibrosis having launched the Rock CF Foundation i…

1
Healthcare funds you could be eligible to get, but probably don't know about. 35:39

7M ago35:39

35:39

“Charity Care is the best kept secret in healthcare.” says Eli Rushbanks "Only 29 percent of the people who should be helped by 340B, are helped." If, like me, you have not heard about Charity Care or Dollar For, I am glad you're here! This podcast will tell you about both Charity Care and the nonprofit, Dollar For. I learned about the program duri…

1
Rare Disease Ph.D. Beth Vanstone and Laura Bonnell 27:39

7M ago27:39

27:39

Are titles important? As a rare disease parent, we think you're worthy of a Ph.D. Listen to our fun conversation about all things rare and the much needed title we may need (or not) to get things done. As a reminder, Beth Vanstone is the mother of two daughters, one who has CF. Madi is 23 years old. Beth is a huge advocate in Canada, and much of th…

1
Private Patient Advocate offers you help 31:46

7M ago31:46

31:46

What is a Private Patient Advocate? Do you need one? Laura talks to Dr. Elena Borrelli who is a Doctor of Medical Science and a Board-Certified Patient Advocate who helps people and families with their health care journey. She practices in Shelby Township, Michigan. Dr. Borelli manages their healthcare as she tries to help them live their healthies…

1
Running a marathon with CF: Dylan Mortimer 35:10

7M ago35:10

35:10

Dylan Mortimer did the NYC Marathon. If you know him, you know that he had two double lung transplants. One in 2017 and one two years later in 2019. His second transplant was in NYC and Dylan talks about what it was like to go back to the streets he could barely walk, pre-transplant. It so touching as Dylan chairs his story with us. I appreciate al…

1
Partnership to Improve Patient Care: legislation explained! 43:51

8M ago43:51

43:51

Patient rights: do you know about the rights you have in regard to healthcare? There is a lot of information for you that Sara and Thayer serve to you here, in terms you can understand. They both work for the Partnership to Improve Patient Care, or PIPC (a coalition). Sara Traigle van Geertruyden is the Executive Director at PIPC. Thayer Roberts is…

1
Heather Trammell: CF and finding your voice 37:53

8M ago37:53

37:53

Life with CF is different for everyone. We have a lot of the same challenges, but we do grow with the disease differently. Heather Trammell, CF Mom to 7 year old Charlie is married to Christopher, (for 13 years now). Heather is a legal assistant in the compliance department at Credit Acceptance. Heather has so much CF Mom wisdom. I am glad to call …

1
Touraj Manshadi falling through the gaps in health policy 36:41

8M ago36:41

36:41

We’re in Canada for this podcast. Canadian Advocate Beth Vanstone has two daughters, one with CF and she’s hosting this podcast with Laura Bonnell. Beth is introducing us to 32-year-old To Touraj Dehghan Manshadi who has a CF mutation that is common to Iran, but rare in Canada where he lives. You may be surprised to learn Canada does not have a rar…

1
CURE FOUND MSU EXPANDS TO UM 39:10

9M ago39:10

39:10

I always tell this group of undergrad students that they are our future, and that makes the future look bright. Atef Choudhury and Naim Mashni are incredible people and students. They're both Seniors at Lyman Briggs College -- majoring in Human Biology. They're minor is in business and they're on the pre- med track. Atef and Naim are the co-founder…

1
Laura Bonnell - From news reporting, to CF and beyond. 31:04

9M ago31:04

31:04

From news reporting, to CF and beyond. Laura talks about her journey. The Bonnell Foundation: Living with cystic fibrosis is 14 years old. "I was so hopeful all those years ago, that my Foundation would take off, and now look at it! We have helped CF families from Michigan to California with financial assistance, lung transplant grants and Educatio…

1
Sorcha's CF journey: from diagnosis to addiction and discovery 44:28

9M ago44:28

44:28

We discuss suicide in this podcast. This could be a trigger for some for you. Please remember the National Suicide Hotline can be reached via text or by calling 988. Sorcha Slyvester-Martin from diagnosis to drugs and discovery. When she was three days old, she was diagnosed with Cystic Fibrosis. She says she had several near-death experiences. Her…

1
My brother and me! Rare, a bit of CF & COTA! 41:11

10M ago41:11

41:11

In this podcast you'll meet my brother Noah Teicher, and my nephew Colton Teicher. I have two younger brothers, but my brother Noah (the middle child) has two boys who had a rare disease. And we talk about their journey from having a rare disease to being cured. Noah and Colton talk about their journey with the Children’s Organ Transplant Associati…

1
Diary of a Dying Girl, Diane (Mallory) Shader Smith 27:26

11M ago27:26

27:26

Diane Shader Smith’s daughter Mallory died from complications of cystic fibrosis 6 years ago. She was 25 years old. Diane initially published her daughter’s diary, "Salt in My Soul". This book gave insight into how Mallory was feeling during her CF fight. Her deepest thoughts, and life lessons. Diane Shader Smith is now releasing a second book on b…

1
Special Insurance for CF families (and others) in MI 33:29

11M ago33:29

33:29

Children’s Special Health Care Services (CSHCS): Have you heard of it? In the simplest terms, it is defined by the need for specialty care required for your child. It’s not a Medicaid program. Access to the program has nothing to do with your household income. The program has a lot of benefits. CSHCS covers transportation that can include airfare a…

1
Remembering Matt McCloskey of Take a Breather 37:29

1y ago37:29

37:29

Shortly after we did this podcast Matt died from complications of cystic fibrosis. With permission from his sisters, and dear friend Jennifer Bleecher (featured in this podcast) we are now airing this podcast to shine a light about what a great man Matt was. He speaks in this podcast about concern for his health. Thanks to Jenn, his family and to M…

1
The Fearless Vagina: Ellen Dolgen 1:00:06

1y ago1:00:06

1:00:06

As people with cystic fibrosis live longer, with a life expectancy currently at about 56 years old, many women with CF will be going through menopause. I recently spoke to doctors at a hospital gathering, and recommended they speak to women with CF about menopause. They agreed. It's time. There is so little discussion and education about women and …

1
Dr. Caleb Bupp, Rare Genius (in our opinion) 43:39

1y ago43:39

43:39

Dr. Caleb Bupp. In my opinion. A scientific star. He is a most humble human, but has every right to brag, but he never would. I do believe he's a genius. You will love this podcast. We talk about rare disease, his family and how he discovered and helped families who had no rare disease answers, until they met him! An absolute scientific rock star. …

1
Cambrey Vasconez White - rare mutations 38:33

1y ago38:33

38:33

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. Row…

1
Brandi Berry, Chidlren's Special Health Care Services Prgrm 39:34

1y ago39:34

39:34

Did you know most states have programs for CF families, and they don’t have to do with your income? Michigan has one of the best programs in the Country. It’s called Children’s Special Healthcare and acts as a secondary insurance to pediatric and adult patients. Brandi Berry tells us all about it. Brandi Berry, LLMSW is the Program Coordinator of t…

1
Dr. Bhanu Jena, another CF modulator on the horizon? 35:36

1y ago35:36

35:36

A new CF modulator could be on the horizon. Professor Dr. Bhanu Jena is exciting to tell us all about it. Dr. Jena was born in a small town in Odisha, India. He got his love for science and medicine from his father and grandfather. He majored in Chemistry, Zoology, and Botany at BJB College in Bhubaneswar, Odisha, India, He got his masters in zoolo…

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