The CFRI CF Community Voices Podcast

This podcast was recorded at CFRI's Cystic Fibrosis Adult Retreat in August, 2026. Non-tuberculous mycobacteria (NTM) are slow growing bacteria that can colonize the lungs of people with cystic fibrosis (CF). Due to the fact that NTM can be resistant to many antibiotics, treating this pathogen can be challenging for people with CF. In this podcast, Elaine Cagnina, MD, PhD explains what NTM is, how it is diagnosed and treated, and what questions to bring to your CF team if you suspect you have NTM or have been diagnosed with an NTM infection.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/56NJC95, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.

This podcast was recorded at CFRI's Cystic Fibrosis Adult Retreat in August, 2026. Non-tuberculous mycobacteria (NTM) are slow growing bacteria that can colonize the lungs of people with cystic fibrosis (CF). Due to the fact that NTM can be resistant to many antibiotics, treating this pathogen can be challenging for people with CF. In this podcast, Elaine Cagnina, MD, PhD explains what NTM is, how it is diagnosed and treated, and what questions to bring to your CF team if you suspect you have NTM or have been diagnosed with an NTM infection.

 

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

 

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/56NJC95, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

 

Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.

Phage therapy is an emerging area of research that offers people with cystic fibrosis (CF) a promising new approach to treating multidrug resistant infections beyond traditional antibiotics. In this podcast, CFRI-funded research, Daria Van Tyne, PhD, explains the science behind phage therapy, shares case examples of its use in people with CF, and discusses important considerations for patients and families interested in exploring this potential treatment with their care team. 

For more information about the University of Pittsburgh's Phage Program, visit https://dom.pitt.edu/id/research/phage/ or email phage@pitt.edu.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/56NJC95, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for this CF Community Voices podcast has been provided to date by Viatris and Vertex Pharmaceuticals.

Everyone's journey to a cystic fibrosis (CF) diagnosis is unique. For some, CF is identified before birth or through newborn screening. For others, the path to diagnosis is much longer, marked by years of unanswered questions, misdiagnoses, and uncertainty. In this podcast, four adults with CF share their personal journeys to receiving a late diagnosis. Reflecting on their experiences from childhood to the present, they describe how their CF-related symptoms were repeatedly attributed to other conditions, the challenges and medical trauma they faced, and the persistence that ultimately led them to the answer they were seeking.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/56NJC95, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for this CF Community Voices podcast has been provided to date by Bruker Biomedical Systems, Viatris, and Vertex Pharmaceuticals.

Everyone's journey to a cystic fibrosis (CF) diagnosis is unique. For some, CF is identified before birth or through newborn screening. For others, the path to diagnosis is much longer, marked by years of unanswered questions, misdiagnoses, and uncertainty. In this podcast, four adults with CF share their personal journeys to receiving a late diagnosis. Reflecting on their experiences from childhood to the present, they describe how their CF-related symptoms were repeatedly attributed to other conditions, the challenges and medical trauma they faced, and the persistence that ultimately led them to the answer they were seeking.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/56NJC95, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for this CF Community Voices podcast has been provided to date by Bruker Biomedical Systems, Viatris, and Vertex Pharmaceuticals.

Imagine going on a cruise to the sunny Caribbean, only to be told by the doctor on board that you were barred from the ship and finishing your vacation. That is exactly what happened to Ella Balasa, an adult with CF, who sought assistance from a cruise doctor whose lack of knowledge of CF led to very unfortunate outcomes. In this podcast, Ella details her story of seeking routine care while feeling unwell and how she utilized self-advocacy in the face of adversity to make sure her needs were met before and after her travels. 

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/56NJC95, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for this CF Community Voices podcast has been provided to date by Viatris and Vertex Pharmaceuticals.

Imagine going on a cruise to the sunny Caribbean, only to be told by the doctor on board that you were barred from the ship and finishing your vacation. That is exactly what happened to Ella Balasa, an adult with CF, who sought assistance from a cruise doctor whose lack of knowledge of CF led to very unfortunate outcomes. In this podcast, Ella details her story of seeking routine care while feeling unwell and how she utilized self-advocacy in the face of adversity to make sure her needs were met before and after her travels. 

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/56NJC95, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for this CF Community Voices podcast has been provided to date by Viatris and Vertex Pharmaceuticals.

This podcast was recorded at CFRI's Cystic Fibrosis Adult Retreat in April, 2026. Many people with cystic fibrosis suffer from headaches caused directly or indirectly by the disease. In this podcast, Megan Drews, PT, DPT, PCS explains the most common types of headaches people with CF experience, how to identify and avoid common triggers, and practical techniques for headache relief. With visual demonstrations and easy-to-follow techniques, listeners will learn ways to better manage headache symptoms and improve quality of life.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/56NJC95, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.

This podcast was recorded at CFRI's Cystic Fibrosis Adult Retreat in April, 2026. Many people with cystic fibrosis suffer from headaches caused directly or indirectly by the disease. In this podcast, Megan Drews, PT, DPT, PCS explains the most common types of headaches people with CF experience, how to identify and avoid common triggers, and practical techniques for headache relief. With visual demonstrations and easy-to-follow techniques, listeners will learn ways to better manage headache symptoms and improve quality of life.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/56NJC95, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.

While highly effective CFTR modulators have transformed the landscape of cystic fibrosis (CF) care, hemoptysis continues to affect many people with CF. In this podcast, Paul K. Mohabir, MD, FACP, MPH explains what hemoptysis is, examines its underlying causes, and discusses the current standard of care for managing significant bleeding, including bronchial artery embolization. Drawing on historical and current research, Dr. Mohabir also explores what is known, and what remains to be learned, about hemoptysis in the post-modulator era, underscoring the need for ongoing research to improve outcomes for people with CF.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/56NJC95, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for this CF Community Voices podcast has been provided to date by Viatris and Vertex Pharmaceuticals.