The CFRI CF Community Voices Podcast

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.

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.

On May 7, 2026, the national scoring system used to determine who receives donated lungs changed. This change occurred despite unanimous opposition from lung transplant experts, and before lung transplant candidates, recipients, and caregivers were able to provide feedback. The change threatens to increase the number of people who do not survive the wait for transplant, and could make matching even more difficult for people who are very short, have type O blood, high antibodies, or who live on the West coast. Luckily, an opportunity to give feedback on this policy change has just opened up. Between now and July 3rd, individuals can submit a comment to share their thoughts on this change to the lung transplant scoring system. At 10:52 in the podcast you will receive very specific instructions for taking action. The lung transplant community needs your help to reverse this change. Visit www.lungtransplantfoundation.org/act to add your public comment.

CFRI would like to thank Willem Wery, an adult with CF who received a double lung transplant, and Carmel Aronson, MSW, volunteer with the Lung Transplant Foundation, for shedding light on this important issue.

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.

On May 7, 2026, the national scoring system used to determine who receives donated lungs changed. This change occurred despite unanimous opposition from lung transplant experts, and before lung transplant candidates, recipients, and caregivers were able to provide feedback. The change threatens to increase the number of people who do not survive the wait for transplant, and could make matching even more difficult for people who are very short, have type O blood, high antibodies, or who live on the West coast. Luckily, an opportunity to give feedback on this policy change has just opened up. Between now and July 3rd, individuals can submit a comment to share their thoughts on this change to the lung transplant scoring system. At 10:52 in the podcast you will receive very specific instructions for taking action. The lung transplant community needs your help to reverse this change. Visit www.lungtransplantfoundation.org/act to add your public comment.

CFRI would like to thank Willem Wery, an adult with CF who received a double lung transplant, and Carmel Aronson, MSW, volunteer with the Lung Transplant Foundation, for shedding light on this important issue.

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. With the advent of highly effective modulator therapies, more females with CF are reaching peri-menopause, menopause, and post-menopause. In this podcast, adult with CF and researcher, Sandy Sufian, PhD, MPD, discusses findings from her study examining how these biological life stages impact females with CF compared to the general population. Dr. Sufian highlights the most commonly reported symptoms experienced during peri-menopause and post-menopause, explores the unique challenges faced by aging females with CF, and identifies research gaps she hopes future studies will address.

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. With the advent of highly effective modulator therapies, more females with CF are reaching peri-menopause, menopause, and post-menopause. In this podcast, adult with CF and researcher, Sandy Sufian, PhD, MPD, discusses findings from her study examining how these biological life stages impact females with CF compared to the general population. Dr. Sufian highlights the most commonly reported symptoms experienced during peri-menopause and post-menopause, explores the unique challenges faced by aging females with CF, and identifies research gaps she hopes future studies will address.

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. The nutritional needs of people with cystic fibrosis differ from those of the general population. Even across people with CF, nutrition is highly personal, with multiple variables impacting an individual's regimen. In this podcast, Emily Yelencich, MS, RD—dietician at Stanford's adult CF center—discusses the caloric intakes, protein needs, lipid considerations, and hydration goals of people with CF, ranging from those who are undernourished to those who are well-nourished or over-nourished.

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/MPYLX9F, 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. The nutritional needs of people with cystic fibrosis differ from those of the general population. Even across people with CF, nutrition is highly personal, with multiple variables impacting an individual's regimen. In this podcast, Emily Yelencich, MS, RD—dietician at Stanford's adult CF center—discusses the caloric intakes, protein needs, lipid considerations, and hydration goals of people with CF, ranging from those who are undernourished to those who are well-nourished or over-nourished.

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/MPYLX9F, 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.

Argentina has one of the highest incidences of cystic fibrosis (CF) in Latin America. In this podcast, Ezequiel Baran, MD, Head of Pulmonology and the Adult CF Center at Hospital Rossi in La Plata, Buenos Aires, discusses the landscape of CF diagnosis and care across the country. Dr. Baran shares the challenges people with CF face in Argentina, how the country is advancing its model of care, and the hopes he holds for the future.

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

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, 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.

Argentina has one of the highest incidences of cystic fibrosis (CF) in Latin America. In this podcast, Ezequiel Baran, MD, Head of Pulmonology and the Adult CF Center at Hospital Rossi in La Plata, Buenos Aires, discusses the landscape of CF diagnosis and care across the country. Dr. Baran shares the challenges people with CF face in Argentina, how the country is advancing its model of care, and the hopes he holds for the future.

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

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, 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.