The CFRI CF Community Voices Podcast

Unique Transplant Journeys: Stories of Strength and Resilience (Video)

April is National Donate Life Month, a time to raise awareness about the importance of organ donation. In this podcast, adults with CF, Elyse Elconin-Goldberg, Missy Peterson, and Willem Wery, reflect on their experiences preparing for, undergoing, and recovering from double lung transplants. With unique journeys, Elyse, Missy, and Willem discuss the joys and challenges of receiving "the gift of breath." They share how they prepared through exercise, therapy, and family support, and offer insights for others considering a transplant or becoming an organ donor. To learn more, visit www.organdonor.gov.

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 CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

Unique Transplant Journeys: Stories of Strength and Resilience (Audio)

April is National Donate Life Month, a time to raise awareness about the importance of organ donation. In this podcast, adults with CF, Elyse Elconin-Goldberg, Missy Peterson, and Willem Wery, reflect on their experiences preparing for, undergoing, and recovering from double lung transplants. With unique journeys, Elyse, Missy, and Willem discuss the joys and challenges of receiving "the gift of breath." They share how they prepared through exercise, therapy, and family support, and offer insights for others considering a transplant or becoming an organ donor. To learn more, visit www.organdonor.gov.

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 CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

The Impacts of CF on Sinonasal Health & Olfactory Function — Jessa E. Miller, MD (Video)

In this podcast, Dr. Jessa E. Miller—Rhinology & Skull Base Surgery Fellow at UCLA—provides background on the anatomy and function of paranasal sinuses, and the impact that ineffective CFTR protein development has on a person with cystic fibrosis’s (CF) ability to properly rid the body’s respiratory system of mucus and trapped debris. Dr. Miller touches on the common experience of Chronic Rhinosinusitis (CRS) among people with CF, with an emphasis on diagnostic criteria, impacts to proper olfactory functioning, and treatment options. Dr. Miller also expertly explains the Unified Airway Theory, which underscores the relationship between the sinuses and lungs, illuminating how pulmonary exacerbations are often seen in conjunction with CRS.

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 CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

The Impacts of CF on Sinonasal Health & Olfactory Function — Jessa E. Miller, MD (audio)

In this podcast, Dr. Jessa E. Miller—Rhinology & Skull Base Surgery Fellow at UCLA—provides background on the anatomy and function of paranasal sinuses, and the impact that ineffective CFTR protein development has on a person with cystic fibrosis’s (CF) ability to properly rid the body’s respiratory system of mucus and trapped debris. Dr. Miller touches on the common experience of Chronic Rhinosinusitis (CRS) among people with CF, with an emphasis on diagnostic criteria, impacts to proper olfactory functioning, and treatment options. Dr. Miller also expertly explains the Unified Airway Theory, which underscores the relationship between the sinuses and lungs, illuminating how pulmonary exacerbations are often seen in conjunction with CRS.

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 CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

CF and Cancer - Chelsea Lau, MD (Video)

In this podcast, Dr. Chelsea Lau, a Fellow Physician in Hematology and Oncology at Northwestern Memorial Hospital, explores the link between cystic fibrosis (CF) and various types of cancer. Dr. Lau provides insights into how cancer develops in the general population and highlights the unique cancer risks for people with CF as well as CF carriers. She discusses the connection between CF and cancers such as intestinal, pancreatic, liver, cervical, and lung cancers, highlighting the latest data on these relationships. The episode concludes by covering screening recommendations and key considerations for managing cancer in the CF community.

 

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 CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals. 

 

CF and Cancer - Chelsea Lau, MD (Audio)

In this podcast, Dr. Chelsea Lau, a Fellow Physician in Hematology and Oncology at Northwestern Memorial Hospital, explores the link between cystic fibrosis (CF) and various types of cancer. Dr. Lau provides insights into how cancer develops in the general population and highlights the unique cancer risks for people with CF as well as CF carriers. She discusses the connection between CF and cancers such as intestinal, pancreatic, liver, cervical, and lung cancers, highlighting the latest data on these relationships. The episode concludes by covering screening recommendations and key considerations for managing cancer in the CF community.

 

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 CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals. 

 

CFRI-Funded Researchers Advance Science and Hope (Video)

In this brief video you will hear from several cystic fibrosis researchers whose work has been funded in part by the Cystic Fibrosis Research Institute. Hear about the innovative research they are pursuing, including phage therapy, stem cell research and gene editing. CFRI-funded research continues to advance our mission to find new therapies - and ultimately a cure - for cystic fibrosis.

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 2025 has been provided to date by Viatris.

CFRI-Funded Researchers Advance Science and Hope (Audio)

In this brief video you will hear from several cystic fibrosis researchers whose work has been funded in part by the Cystic Fibrosis Research Institute. Hear about the innovative research they are pursuing, including phage therapy, stem cell research and gene editing. CFRI-funded research continues to advance our mission to find new therapies - and ultimately a cure - for cystic fibrosis.

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 2025 has been provided to date by Viatris.

Modulators, Pregnancy, & The Power of Advocacy Through It All - Crystal Boeckel (Video)

In this podcast, Crystal Boeckel, an adult living with cystic fibrosis (CF), reflects on her experiences being pregnant and giving birth to her two sons, the first time off and the second time on a CFTR modulator therapy. Crystal shares the health challenges she faced in the latter half of both her pregnancies with cholestasis—a condition that occurs when bile flow from the liver to the small intestine is reduced or blocked—resulting in early labors and deliveries. Crystal discusses how these medical challenges, compounded by differing levels of support and knowledge of CF from her medical teams, impacted her emotional well-being, and how she advocated for herself when her needs were not fully met.

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 2025 has been provided to date by Viatris.

Modulators, Pregnancy, & The Power of Advocacy Through It All - Crystal Boeckel (Audio)

In this podcast, Crystal Boeckel, an adult living with cystic fibrosis (CF), reflects on her experiences being pregnant and giving birth to her two sons, the first time off and the second time on a CFTR modulator therapy. Crystal shares the health challenges she faced in the latter half of both her pregnancies with cholestasis—a condition that occurs when bile flow from the liver to the small intestine is reduced or blocked—resulting in early labors and deliveries. Crystal discusses how these medical challenges, compounded by differing levels of support and knowledge of CF from her medical teams, impacted her emotional well-being, and how she advocated for herself when her needs were not fully met.

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 2025 has been provided to date by Viatris.