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.

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.