The CFRI CF Community Voices Podcast

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.

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.

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.

Cystic fibrosis (CF) is the most common fatal genetic disease in the United States. CF impacts people of every race and ethnicity, yet outdated information and inadequate newborn screening programs perpetuate the misconception that CF only impacts people of European descent. CFRI remains steadfast in our commitment to spotlighting and supporting the needs of every person with CF—ensuring that timely diagnoses, supportive care, developing therapies, useful resources, and opportunities for connection are made accessible for all. For more information about CFRI's diversity and inclusion program, visit www.cfri.org/diversity-and-inclusion. This film was made possible through educational grants provided by Viatris and Genentech.

March is colorectal cancer awareness month—a time to spotlight the increased risk people with CF and CF carriers face when it comes to developing colon cancer. In this podcast, Jennifer Kyle, an adult with CF, shares the moment she learned that malignant polyps had been found in her colon after finally undergoing a routine screening. Urging others to speak with their care teams and get screened early, Jennifer highlights that colonoscopies aren't just boxes to check on a list but are life-saving diagnostic tools. For more information about CF and colon cancer, visit https://curecf.cfri.org/3rkzjuxn. 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.

March is colorectal cancer awareness month—a time to spotlight the increased risk people with CF and CF carriers face when it comes to developing colon cancer. In this podcast, Jennifer Kyle, an adult with CF, shares the moment she learned that malignant polyps had been found in her colon after finally undergoing a routine screening. Urging others to speak with their care teams and get screened early, Jennifer highlights that colonoscopies aren't just boxes to check on a list but are life-saving diagnostic tools. For more information about CF and colon cancer, visit https://curecf.cfri.org/3rkzjuxn. 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.

People with cystic fibrosis face a significantly increased risk of developing colon cancer. Research shows that people with CF may develop colon cancer 20-30 years earlier than the general population and are 5-10 times more likely to be diagnosed. For those who have undergone a solid organ transplant, the risk dramatically rises up to 25-30 times higher. In this podcast, Gretchen Goble, MD, outlines why people with cystic fibrosis are at an increased risk, what early warning signs to look out for, and the latest screening recommendations designed specifically for the CF community. If you are an adult with CF, and have not discussed colon cancer screening with your care team, this conversation could be an important next step. For more information about CF and colon cancer, visit https://curecf.cfri.org/3rkzjuxn. Dr. Goble is a CFRI 2025 Patrick Nash Fellow, studying the increased presence of comorbidities—such as colon cancer—among people with CF as they age. For more information about CFRI's Patrick Nash Fellows Training Program, visit https://curecf.cfri.org/2p99nuym. 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.

People with cystic fibrosis face a significantly increased risk of developing colon cancer. Research shows that people with CF may develop colon cancer 20-30 years earlier than the general population and are 5-10 times more likely to be diagnosed. For those who have undergone a solid organ transplant, the risk dramatically rises up to 25-30 times higher. In this podcast, Gretchen Goble, MD, outlines why people with cystic fibrosis are at an increased risk, what early warning signs to look out for, and the latest screening recommendations designed specifically for the CF community. If you are an adult with CF, and have not discussed colon cancer screening with your care team, this conversation could be an important next step. For more information about CF and colon cancer, visit https://curecf.cfri.org/3rkzjuxn. Dr. Goble is a CFRI 2025 Patrick Nash Fellow, studying the increased presence of comorbidities—such as colon cancer—among people with CF as they age. For more information about CFRI's Patrick Nash Fellows Training Program, visit https://curecf.cfri.org/2p99nuym. 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.

Students with cystic fibrosis may require accommodations on account of their disease or another disability in order to reach their full academic potential. In this podcast, Hannah Pfeiffer, M.Ed. and Rachel Alder, adults with CF, explain the difference between an Individual Education Program (IEP) and 504 Plan. Hannah and Rachel detail how to speak with one's medical team and school to determine which support program is appropriate, and provide example accommodations that may specifically help 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/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.

Students with cystic fibrosis may require accommodations on account of their disease or another disability in order to reach their full academic potential. In this podcast, Hannah Pfeiffer, M.Ed. and Rachel Alder, adults with CF, explain the difference between an Individual Education Program (IEP) and 504 Plan. Hannah and Rachel detail how to speak with one's medical team and school to determine which support program is appropriate, and provide example accommodations that may specifically help 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/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.

January is Cervical Cancer Awareness Month! Females with cystic fibrosis—especially those who have received a transplant—face an elevated risk of abnormal Pap smears. This increased risk is often related to human papillomavirus (HPV) infection or cervical dysplasia, which can progress to cervical cancer. In this podcast, Christina Thornton, MD, PhD, FRCPC, discusses risk factors among people with CF for developing HPV and cervical cancer, such as low vaccination rates and the presence of immunosuppressant drugs, recent research studies, and strategies to prevent and diagnose these conditions early. If you have not yet spoken with your CF care team about this elevated risk, consider raising this important topic. 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.

January is Cervical Cancer Awareness Month! Females with cystic fibrosis—especially those who have received a transplant—face an elevated risk of abnormal Pap smears. This increased risk is often related to human papillomavirus (HPV) infection or cervical dysplasia, which can progress to cervical cancer. In this podcast, Christina Thornton, MD, PhD, FRCPC, discusses risk factors among people with CF for developing HPV and cervical cancer, such as low vaccination rates and the presence of immunosuppressant drugs, recent research studies, and strategies to prevent and diagnose these conditions early. If you have not yet spoken with your CF care team about this elevated risk, consider raising this important topic. 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.

For 50 years, CFRI has been a partner in living for the cystic fibrosis (CF) community. Through national awareness campaigns, CF research funding, education and support services, and advocacy at the state and national levels, CFRI aims to elevate the needs of our CF community members and find solutions to the challenges faced. Watch CFRI’s 2025 Advocacy & Awareness film here to learn more about how we are making a difference alongside our diverse and resilient community. Funding for this awareness campaign was provided by Viatris, Genentech, Vertex Pharmaceuticals, Bucks County CF Alliance, and the Partnership to Improve Patient Care.

Cystic fibrosis (CF) impacts people of every race and ethnicity, including members of the South Asian community. Due to the common misperception of CF as a disease impacting only those of European descent, many individuals suffer years without a diagnosis and face barriers to accessing emerging treatments. This powerful film highlights the voices of individuals of South Asian descent living with CF as they share their personal journeys and the challenges they have faced. 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. This film was made possible through educational grants provided by Genetech, AbbVie, Viatris, ReCode, and Gilead Sciences.

Cystic fibrosis (CF) impacts people of every race and ethnicity, including members of the South Asian community. Due to the common misperception of CF as a disease impacting only those of European descent, many individuals suffer years without a diagnosis and face barriers to accessing emerging treatments. This powerful film highlights the voices of individuals of South Asian descent living with CF as they share their personal journeys and the challenges they have faced. 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. This film was made possible through educational grants provided by Genetech, AbbVie, Viatris, ReCode, and Gilead Sciences.

Highly effective modulator therapies and other treatment advancements have significantly improved life expectancy for many people with cystic fibrosis (CF). In this podcast, registered CF dietician Kristi Cheng discusses dietary patterns linked to healthy aging and reduced risks of chronic diseases, such as diabetes, heart disease, and cancer. Cheng explores how the legacy CF diet—otherwise known as the "McDonald's Diet"—can be practically adapted to meet the nutritional needs of a longer-living CF population focused on sustaining health and preventing comorbidities. 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.

Highly effective modulator therapies and other treatment advancements have significantly improved life expectancy for many people with cystic fibrosis (CF). In this podcast, registered CF dietician Kristi Cheng discusses dietary patterns linked to healthy aging and reduced risks of chronic diseases, such as diabetes, heart disease, and cancer. Cheng explores how the legacy CF diet—otherwise known as the "McDonald's Diet"—can be practically adapted to meet the nutritional needs of a longer-living CF population focused on sustaining health and preventing comorbidities. 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.

In a 2023 study across five US CF centers, 33% of women with cystic fibrosis reported experiencing intimate partner violence (IPV) in their lifetime. This IPV awareness month, CF social worker Brooke Jones, PhD(c), LCSW, and an adult with CF discuss the impact of chronic illness on romantic relationships, the increased risk of IPV among people with CF, and how to access support. For IPV support, call the national domestic violence hotline at 1(800)-799-7233, or text 'START' to 88788. thehotline.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 to date by Viatris and Vertex Pharmaceuticals.

In a 2023 study across five US CF centers, 33% of women with cystic fibrosis reported experiencing intimate partner violence (IPV) in their lifetime. This IPV awareness month, CF social worker Brooke Jones, PhD(c), LCSW, and an adult with CF discuss the impact of chronic illness on romantic relationships, the increased risk of IPV among people with CF, and how to access support. For IPV support, call the national domestic violence hotline at 1(800)-799-7233, or text 'START' to 88788. thehotline.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 to date by Viatris and Vertex Pharmaceuticals.

People living with cystic fibrosis face unique health challenges, especially when it comes to respiratory infections. In this podcast, Dr. Richard Moss provides data demonstrating which populations are most at risk of adverse health complications post-infection, and explores why vaccines for the flu, COVID-19, and RSV are essential tools for protecting those 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/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.

People living with cystic fibrosis face unique health challenges, especially when it comes to respiratory infections. In this podcast, Dr. Richard Moss provides data demonstrating which populations are most at risk of adverse health complications post-infection, and explores why vaccines for the flu, COVID-19, and RSV are essential tools for protecting those 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/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.

Many people with cystic fibrosis report gastrointestinal discomfort as a daily challenge and barrier to optimal quality of life. In this podcast, Emily Yelencich, MS, RD, provides an overview of the key differences within the microbiome of people with CF compared to the general population, and how those differences result in increased difficulties with digestion, reduced absorption of nutrients, lower lung function, and higher rates of colorectal cancer. Yelencich rounds out the conversation with useful diet, nutrition, and bowel regimen tips that can help inform conversations with one’s CF care team. 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.

Many people with cystic fibrosis report gastrointestinal discomfort as a daily challenge and barrier to optimal quality of life. In this podcast, Emily Yelencich, MS, RD, provides an overview of the key differences within the microbiome of people with CF compared to the general population, and how those differences result in increased difficulties with digestion, reduced absorption of nutrients, lower lung function, and higher rates of colorectal cancer. Yelencich rounds out the conversation with useful diet, nutrition, and bowel regimen tips that can help inform conversations with one’s CF care team. 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.   

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.   

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.

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.

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.

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.

Matt De Fina shares the highs and lows of his life with cystic fibrosis (CF), including two double lung transplants and a career shift to winemaking in the Napa Valley. Hear about his transplant journey, and the people, events and activities that inspired his rapid recovery. Learn about the business he and his wife Denise launched, De Fina Family Cellars, the inspiration behind the artwork and the wine itself (cabernet franc = CF), and the ways in which the business helps support other CF programs. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Matt De Fina shares the highs and lows of his life with cystic fibrosis (CF), including two double lung transplants and a career shift to winemaking in the Napa Valley. Hear about his transplant journey, and the people, events and activities that inspired his rapid recovery. Learn about the business he and his wife Denise launched, De Fina Family Cellars, the inspiration behind the artwork and the wine itself (cabernet franc = CF), and the ways in which the business helps support other CF programs. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

In this podcast, Katie Larson Ode, MD, Pediatric Endocrinology and Diabetes, discusses cystic fibrosis related diabetes (CFRD) which is the most common non-pulmonary complication among people with cystic fibrosis (CF). Dr. Larson Ode offers a better understanding of CFRD as this form of diabetes is unique to CF and is different from type 1 and type 2 diabetes. Dr. Larson Ode also shares the latest studies on how cystic fibrosis transmembrane conductance regulator (CFTR) corrective therapies could treat CFRD. This presentation was recorded at CFRI’s 2024 CF Adult Retreat. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.