The CFRI CF Community Voices Podcast

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...

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...

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...

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, c...

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, c...

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 a...

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 a...

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, l...

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, l...

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...

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...

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 t...

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 t...

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...

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 a...

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 a...

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 n...

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 n...

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 e...

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 e...

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 b...

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 b...

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 Rhin...

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 Rhin...

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 cancer...