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 C…

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 C…

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…

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…

In less than three minutes, viewers will learn about cystic fibrosis (CF), the need for continued research to find a cure, the diversity of our community, and the many programs and services CFRI offers to the CF community. Please share with your networks to expand the impact of this film. Awareness is key to connect our community members to needed …

In this podcast, Lauren Kormelink, PharmD, BCACP, University of Kentucky Adult Cystic Fibrosis Center, discusses the very real challenges of constipation among people with cystic fibrosis (CF).Dr. Kormelink compares newer medications for treatment of constipation, reviews existing data for newer medications, and provides a first look at data (pendi…

In this podcast, Lauren Kormelink, PharmD, BCACP, University of Kentucky Adult Cystic Fibrosis Center, discusses the very real challenges of constipation among people with cystic fibrosis (CF).Dr. Kormelink compares newer medications for treatment of constipation, reviews existing data for newer medications, and provides a first look at data (pendi…

In this podcast, Alexandra “Xan” C.H. Nowakowski, PhD, MPH, and Associate Professor at Florida State University College of Medicine, discusses renal challenges emerging among aging adults with cystic fibrosis (CF).Dr. Nowakowski helps identify key renal complications of CF, reviews CF and kidney health, and presents best practices for CF nephrology…

In this podcast, Alexandra “Xan” C.H. Nowakowski, PhD, MPH, and Associate Professor at Florida State University College of Medicine, discusses renal challenges emerging among aging adults with cystic fibrosis (CF). Dr. Nowakowski helps identify key renal complications of CF, reviews CF and kidney health, and presents best practices for CF nephrolog…

Cystic fibrosis and men’s sexual and reproductive health has long been a neglected topic that must be addressed as part of one’s total health. In this podcast, Reuben Samuels and Georgia Brown share vital information from statistical and personal perspectives. Reuben is President of Breathe Easy International, a Certified Crisis Interventionist and…

Cystic fibrosis and men’s sexual and reproductive health has long been a neglected topic that must be addressed as part of one’s total health. In this podcast, Reuben Samuels and Georgia Brown share vital information from statistical and personal perspectives. Reuben is President of Breathe Easy International, a Certified Crisis Interventionist and…

Caleigh Haber-Takayama is living with cystic fibrosis, has undergone two double lung transplants and three open heart surgeries, and is a full-time traveler and nomad having traveled North America, Asia, and Europe. Learn imperative travel tips in how to prepare for upcoming travel, stay prepared while on your trip, and know what to do if something…

Caleigh Haber-Takayama is living with cystic fibrosis, has undergone two double lung transplants and three open heart surgeries, and is a full-time traveler and nomad having traveled North America, Asia, and Europe. Learn imperative travel tips in how to prepare for upcoming travel, stay prepared while on your trip, and know what to do if something…

This podcast was recorded at CFRI’s 2024 CF Adult Retreat. Dr. Alex Despotes, Pulmonary/Critical Care Medicine, and Pediatric Pulmonology at the University of North Carolina at Chapel Hill, and a CFRI Patrick Nash Fellow, presented an overview of heart disease and its growing prevalence among those with CF, including risk factors, symptoms, and pre…

This podcast was recorded at CFRI’s 2024 CF Adult Retreat. Dr. Alex Despotes, Pulmonary/Critical Care Medicine, and Pediatric Pulmonology at the University of North Carolina at Chapel Hill, and a CFRI Patrick Nash Fellow, presented an overview of heart disease and its growing prevalence among those with CF, including risk factors, symptoms, and pre…

Medical trauma is experienced by many individuals with cystic fibrosis - both children and adults. Kate Yablonsky, LCSW, social worker at the Stanford Adult CF Center, reviews the signs and symptoms of medical trauma, and discusses specific therapeutic models that have been found to be helpful for people with CF and their loved ones to effectively …

Medical trauma is experienced by many individuals with cystic fibrosis - both children and adults. Kate Yablonsky, LCSW, social worker at the Stanford Adult CF Center, reviews the signs and symptoms of medical trauma, and discusses specific therapeutic models that have been found to be helpful for people with CF and their loved ones to effectively …

In this panel session, three adults with CF - Rachel Alder, Jaelyn Cooper, MHA, and Abhijit Tirumala – as well as a mother of an adult son with CF, Alicia Maciel, MBA, share their personal experiences and insights navigating bias to develop productive partnerships with care teams and fellow community members so as to improve medical care and qualit…

In this panel session, three adults with CF - Rachel Alder, Jaelyn Cooper, MHA, and Abhijit Tirumala – as well as a mother of an adult son with CF, Alicia Maciel, MBA, share their personal experiences and insights navigating bias to develop productive partnerships with care teams and fellow community members so as to improve medical care and qualit…

Dr. Luanne McKinnon, an adult with CF who has had a rich career in the visual arts for over forty-five years, recounts in colorful detail her life with CF, from a diagnosis in 1969 through the arc of CF care that, like a travel log, leads us from Texas to Europe to New York City, Scotland and France, then New Mexico to Palo Alto. Dr. McKinnon also …

Dr. Luanne McKinnon, an adult with CF who has had a rich career in the visual arts for over forty-five years, recounts in colorful detail her life with CF, from a diagnosis in 1969 through the arc of CF care that, like a travel log, leads us from Texas to Europe to New York City, Scotland and France, then New Mexico to Palo Alto. Dr. McKinnon also …

Dr. Natalie West, Assistant Professor of Medicine of Pulmonary and Critical Care Medicine at Johns Hopkins University and Associate Program Director of the Adult CF Program, addresses a wide range of sexual and reproductive health topics - including puberty, transgender and gender nonbinary identities, contraception, cyclical hemoptysis, fertility,…

Dr. Natalie West, Assistant Professor of Medicine of Pulmonary and Critical Care Medicine at Johns Hopkins University and Associate Program Director of the Adult CF Program, addresses a wide range of sexual and reproductive health topics - including puberty, transgender and gender nonbinary identities, contraception, cyclical hemoptysis, fertility,…

Nicholas Kelly, adult with CF, dietitian, author, artist, motivational speaker, and advocate, shares his experiences living with a chronic disease, what it takes to fight despite obstacles, and thrive in the face of adversity. He talks about his passion for shining a light on research, addressing inadequacies, advocating for the community, and driv…

Nicholas Kelly, adult with CF, dietitian, author, artist, motivational speaker, and advocate, shares his experiences living with a chronic disease, what it takes to fight despite obstacles, and thrive in the face of adversity. He talks about his passion for shining a light on research, addressing inadequacies, advocating for the community, and driv…

Robin Modlin, mother of an adult daughter with CF, artist and writer, reads excerpts from her book “Love, Courage and Miracles.” The autobiographic book chronicles Robin’s daughter Anna's life-limiting prognosis, the challenges of living with cystic fibrosis, and Anna's miracle resurrection through a double lung transplant. It is a testament to the…

Robin Modlin, mother of an adult daughter with CF, artist and writer, reads excerpts from her book “Love, Courage and Miracles.” The autobiographic book chronicles Robin’s daughter Anna's life-limiting prognosis, the challenges of living with cystic fibrosis, and Anna's miracle resurrection through a double lung transplant. It is a testament to the…

Dr. Lucas Hoffman, Professor of Pediatrics and Adjunct Professor of Microbiology at the University of Washington in Seattle and Seattle Children’s Hospital, reviews the microbes that are most frequently detected and other less common ones involved in CF airway infections. He discusses the benefits and risks of current treatments, especially antibio…

Dr. Lucas Hoffman, Professor of Pediatrics and Adjunct Professor of Microbiology at the University of Washington in Seattle and Seattle Children’s Hospital, reviews the microbes that are most frequently detected and other less common ones involved in CF airway infections. He discusses the benefits and risks of current treatments, especially antibio…

Dr. Benjamin Chan, Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, gives a comprehensive overview on bacteriophage (phage) therapy, the therapeutic administration of the bacteria killing viruses. He shares experiments and case studies that resulted in a significant decrease in production of tar…

Dr. Benjamin Chan, Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, gives a comprehensive overview on bacteriophage (phage) therapy, the therapeutic administration of the bacteria killing viruses. He shares experiments and case studies that resulted in a significant decrease in production of tar…

In this panel session, three adults with CF - Elyse Elconin Goldberg, MA, Thomas Horal, and Colleen Lewis - share their personal experiences with diverse cancer diagnoses, while a sibling of an adult with CF – Christine Nash, MBA - describes her brother’s battle with pancreatic cancer. Moderated by Jean Hanley, MD, the discussion explores panelists…

In this panel session, three adults with CF - Elyse Elconin Goldberg, MA, Thomas Horal, and Colleen Lewis - share their personal experiences with diverse cancer diagnoses, while a sibling of an adult with CF – Christine Nash, MBA - describes her brother’s battle with pancreatic cancer. Moderated by Jean Hanley, MD, the discussion explores panelists…

Samantha Johnson, Certified Child Life Specialist III at Stanford Children's Hospital, and Kate Yablonsky, social worker at the Stanford Adult CF Center, review signs and symptoms of medical trauma and discuss strategies for people with CF and their loved ones across the lifespan to effectively process and integrate these experiences. The presentat…

Samantha Johnson, Certified Child Life Specialist III at Stanford Children's Hospital, and Kate Yablonsky, social worker at the Stanford Adult CF Center, review signs and symptoms of medical trauma and discuss strategies for people with CF and their loved ones across the lifespan to effectively process and integrate these experiences. The presentat…

Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and former Director of the Stanford CF Center, presents an overview of the challenges of aging in the modulator era of CF, such as diabetes, a variety of cancers, cardiovascular disease, obesity, osteoporosis, and other health challenges. He also presents CFRI’s new programmatic…

Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and former Director of the Stanford CF Center, presents an overview of the challenges of aging in the modulator era of CF, such as diabetes, a variety of cancers, cardiovascular disease, obesity, osteoporosis, and other health challenges. He also presents CFRI’s new programmatic…

Dr. Amy Ryan, Associate Professor of Anatomy and Cell Biology and Associate Director of the Center for Gene Therapy at the University of Iowa, highlights potential mechanisms underlying immune complications observed in CF patients despite modulator treatment. She discusses an integrated approach combining physics-based models, gene-edited immune ce…

Dr. Amy Ryan, Associate Professor of Anatomy and Cell Biology and Associate Director of the Center for Gene Therapy at the University of Iowa, highlights potential mechanisms underlying immune complications observed in CF patients despite modulator treatment. She discusses an integrated approach combining physics-based models, gene-edited immune ce…

Dr. Jennifer Taylor-Cousar, a tenured professor of adult and pediatric pulmonary medicine and co-director of the Adult CF Program at National Jewish Health, gives a comprehensive overview of nucleic acid-based therapies (NABT), which aim to deliver the correct instructions to the cell for making a functional CFTR protein. She reviews lessons learne…

Dr. Jennifer Taylor-Cousar, a tenured professor of adult and pediatric pulmonary medicine and co-director of the Adult CF Program at National Jewish Health, gives a comprehensive overview of nucleic acid-based therapies (NABT), which aim to deliver the correct instructions to the cell for making a functional CFTR protein. She reviews lessons learne…

California has two programs that can help CF patients with health care access, but many don’t utilize this support because they are not aware of their eligibility and potential assistance. Lynne Kinst, Executive Director of the Hemophilia Council of California, provides an overview of California’s Genetically Handicapped Person’s Program (GHPP) whi…

California has two programs that can help CF patients with health care access, but many don’t utilize this support because they are not aware of their eligibility and potential assistance. Lynne Kinst, Executive Director of the Hemophilia Council of California, provides an overview of California’s Genetically Handicapped Person’s Program (GHPP) whi…

In this podcast, David Weill, MD, discusses his newest – and first fictional – book, All That Really Matters, in which transplant plays a central theme. Dr. Weill spent over 20 years as a transplant physician, including as Director of Stanford’s Center for Advanced Lung Disease and the Lung Transplant Program. In addition to sharing a reading from …

In this podcast, David Weill, MD, discusses his newest – and first fictional – book, All That Really Matters, in which transplant plays a central theme. Dr. Weill spent over 20 years as a transplant physician, including as Director of Stanford’s Center for Advanced Lung Disease and the Lung Transplant Program. In addition to sharing a reading from …

Colonoscopy screenings are the #1 way to prevent colon cancer. In this recorded webinar, join Jeffrey King, MD, gastroenterologist at National Jewish Health, for a candid conversation about how to prepare for a successful colonoscopy as someone with CF, and what to expect during the procedure. By demystifying the colonoscopy process, it is hoped th…

Colonoscopy screenings are the #1 way to prevent colon cancer. In this recorded webinar, join Jeffrey King, MD, gastroenterologist at National Jewish Health, for a candid conversation about how to prepare for a successful colonoscopy as someone with CF, and what to expect during the procedure. By demystifying the colonoscopy process, it is hoped th…

In this third podcast of our Stretch Your Budget series, join Maggie Williamson, a professional chef living with cystic fibrosis post-transplant, to learn tips on what to shop for and how to stretch $20 to create several days’ worth of meals. Maggie provides a base recipe for ‘batch cooking’ (see link below) to make large quantity and versatile mea…

In this third podcast of our Stretch Your Budget series, join Maggie Williamson, a professional chef living with cystic fibrosis post-transplant, to learn tips on what to shop for and how to stretch $20 to create several days’ worth of meals. Maggie provides a base recipe for ‘batch cooking’ (see link below) to make large quantity and versatile mea…

In this podcast, Arek Puzia, CPA, CFP, and the father of a daughter with cystic fibrosis, provides information on planning for the future when resources are very limited. Learn what to consider in growing your assets with a low cost and well diversified portfolio, company 401K plans, and first-time home ownership programs. Also, Arek shares some ti…