7.1K
Downloads
504
Episodes
CFRI's CF Community Voices is a video podcast series created by and for the cystic fibrosis community.
Episodes
Wednesday Sep 17, 2025
Wednesday Sep 17, 2025
People with cystic fibrosis face an increased risk of developing infections, which can lead to severe adverse health impacts. In this podcast, Dr. Ali Al Safi provides an overview of common CF-specific pathogens and their clinical implications, discusses how resistant infections develop, and provides insight into current evidence for optimal duration of antimicrobial therapy.
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 and Vertex Pharmaceuticals.
Wednesday Sep 17, 2025
Wednesday Sep 17, 2025
People with cystic fibrosis face an increased risk of developing infections, which can lead to severe adverse health impacts. In this podcast, Dr. Ali Al Safi provides an overview of common CF-specific pathogens and their clinical implications, discusses how resistant infections develop, and provides insight into current evidence for optimal duration of antimicrobial therapy.
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 and Vertex Pharmaceuticals.
Wednesday Sep 17, 2025
Wednesday Sep 17, 2025
Advancements in CF care have led to increased quality and length of life for many people with CF, yet chronic lung infections remain a persistent challenge for many. In this podcast, Paul Bollyky, MD, PhD, explains what bacteriophages are, how they are being used to treat certain infections faced by people with CF, and what the future of research for this type of treatment looks like.
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 by Viatris and Vertex Pharmaceuticals.
Wednesday Sep 17, 2025
Wednesday Sep 17, 2025
Advancements in CF care have led to increased quality and length of life for many people with CF, yet chronic lung infections remain a persistent challenge for many. In this podcast, Paul Bollyky, MD, PhD, explains what bacteriophages are, how they are being used to treat certain infections faced by people with CF, and what the future of research for this type of treatment looks like.
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 by Viatris and Vertex Pharmaceuticals.
Tuesday Sep 09, 2025
Tuesday Sep 09, 2025
People with cystic fibrosis may face an increased risk of developing eating disorders and body image challenges. Factors such as the burden of eating, pancreatic insufficiency, the impact of medications, and exercise disturbances have all been documented as contributing concerns for individuals living with CF. In this podcast, individuals with CF—Daelyn James (@,daelyn_j ) Amy Lauren, and Madison Gore—share their personal experiences navigating body image challenges, disordered eating, and societal expectations. Following these personal perspectives, Dr. Amy Darukhanavala (Daru), Associate Professor of Pediatrics and pediatric endocrinologist at Yale Medical Center in New Haven, CT, provides clinical insights. Dr. Daru provides an overview of the literature on the topic of CF, eating disorders, and body image, and provides considerations for working with one's multidisciplinary CF team to find support.
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 by Viatris and Vertex Pharmaceuticals.
Wednesday Sep 03, 2025
Wednesday Sep 03, 2025
In this podcast, Dr. Golnar Raissi, co-founder of the nonprofit CF Bridge of Hope, describes how the program pursues its mission to improve the health of individuals with cystic fibrosis and extend the same treatments that are available in the United States to those who live in resource-limited areas of the world. The program brings children with CF to the United States to stabilize their health and equip them with therapies to continue care in their home countries. CF Bridge of Hope's partnerships include doctors, care providers, community members, faith-based organizations, and elected officials who volunteer their time. Dr, Raissi inspires others to care for our CF community members around the globe.
To learn more about CF Bridge of Hope, go to www.cfbridgeofhope.org.
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 by Viatris and Vertex Pharmaceuticals.
Wednesday Sep 03, 2025
Wednesday Sep 03, 2025
In this podcast, Dr. Golnar Raissi, co-founder of the nonprofit CF Bridge of Hope, describes how the program pursues its mission to improve the health of individuals with cystic fibrosis and extend the same treatments that are available in the United States to those who live in resource-limited areas of the world. The program brings children with CF to the United States to stabilize their health and equip them with therapies to continue care in their home countries. CF Bridge of Hope's partnerships include doctors, care providers, community members, faith-based organizations, and elected officials who volunteer their time. Dr, Raissi inspires others to care for our CF community members around the globe.
To learn more about CF Bridge of Hope, go to www.cfbridgeofhope.org.
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 by Viatris and Vertex Pharmaceuticals.
Monday Aug 04, 2025
Monday Aug 04, 2025
Nontuberculous mycobacteria (NTM) infection prevalence has increased among those with cystic fibrosis (CF), impacting 1 out of 10 people with CF. In this podcast, Amy Leitman, JD, shares what nontuberculous mycobacterial (NTM) lung disease is, and why its resistance to many treatments poses serious risks to those living with cystic fibrosis. Amy is President of NTM Info & Research (NTMir), a national non-profit organization dedicated to supporting patients with NTM through global respiratory health awareness (including World NTM Awareness Day on August 4), patient advocacy and policy reform.
For more information on NTMir and World NTM Awareness Day: NTMir Facebook, Instagram (@ntminfo), X (@ntminfo), and LinkedIn.
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 and Vertex Pharmaceuticals.
Monday Aug 04, 2025
Monday Aug 04, 2025
Nontuberculous mycobacteria (NTM) infection prevalence has increased among those with cystic fibrosis (CF), impacting 1 out of 10 people with CF. In this podcast, Amy Leitman, JD, shares what nontuberculous mycobacterial (NTM) lung disease is, and why its resistance to many treatments poses serious risks to those living with cystic fibrosis. Amy is President of NTM Info & Research (NTMir), a national non-profit organization dedicated to supporting patients with NTM through global respiratory health awareness (including World NTM Awareness Day on August 4), patient advocacy and policy reform.
For more information on NTMir and World NTM Awareness Day: NTMir Facebook, Instagram (@ntminfo), X (@ntminfo), and LinkedIn.
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 and Vertex Pharmaceuticals.
Wednesday Jun 04, 2025
Wednesday Jun 04, 2025
Despite the higher rates of incontinence among people with CF - due to coughing, which puts strain on one's pelvic floor muscles - stigma and embarrassment keep many people from seeking treatment. In this podcast, Georgia Brown, MLA, an adult living with CF, shares her personal journey with incontinence, opening up about her initial challenges in speaking with providers, how she eventually found effective treatment, and the significant improvement in her quality of life after seeking medical support. Georgia is joined by Dr. Abigail Shatkin-Margolis, Associate Professor of Obstetrics & Gynecology in the Division of Urogynecology & Minimally Invasive Gynecologic Surgery at the University of California San Francisco. Dr. Shatkin-Margolis discusses what incontinence is, its various forms, its specific impact on people with CF, and the range of treatment options available.
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 by Viatris and Vertex Pharmaceuticals.