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CFRI's CF Community Voices is a video podcast series created by and for the cystic fibrosis community.
Episodes
7 days ago
7 days ago
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.
7 days ago
7 days ago
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.
Wednesday May 27, 2026
Wednesday May 27, 2026
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.
Wednesday May 27, 2026
Wednesday May 27, 2026
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.
Wednesday May 13, 2026
Wednesday May 13, 2026
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.
Wednesday May 13, 2026
Wednesday May 13, 2026
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.
Wednesday Apr 29, 2026
Wednesday Apr 29, 2026
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.
Wednesday Apr 29, 2026
Wednesday Apr 29, 2026
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.
Wednesday Apr 08, 2026
Wednesday Apr 08, 2026
Finding humor in difficult times can be a powerful coping tool. For people living with CF, it can bring levity to experiences that are often confusing, frustrating, and painful. In this podcast, Mimi Salonen, an adult with CF, shares how pursuing stand-up comedy became both a creative outlet and a way to fulfill a lifelong dream, all while raising awareness about CF and making audiences laugh along the way.
To see more of Mimi Salonen's content, visit https://mimisalonen.com/. Video content of Mimi's stand-up comedy shows was taken from her Mortified set in Denver and can be found here: https://www.youtube.com/watch?v=vuIj6b5d_x0&t=905s.
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.
Wednesday Apr 08, 2026
Wednesday Apr 08, 2026
Finding humor in difficult times can be a powerful coping tool. For people living with CF, it can bring levity to experiences that are often confusing, frustrating, and painful. In this podcast, Mimi Salonen, an adult with CF, shares how pursuing stand-up comedy became both a creative outlet and a way to fulfill a lifelong dream, all while raising awareness about CF and making audiences laugh along the way.
To see more of Mimi Salonen's content, visit https://mimisalonen.com/. Video content of Mimi's stand-up comedy shows was taken from her Mortified set in Denver and can be found here: https://www.youtube.com/watch?v=vuIj6b5d_x0&t=905s.
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.