The CFRI CF Community Voices Podcast

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 de...

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 de...

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 historica...

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 historica...

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 eve...

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 eve...

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...

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...

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...

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...

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 t...

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 t...

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 alon...

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 alon...

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 time...

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 ea...

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 ea...

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, outlin...

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, outlin...

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 w...

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 w...

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...

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...

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 abou...

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 C...