People with cystic fibrosis have 5-10 times the risk of developing colon cancer (25-30 times the risk post-transplant). Learn about the connection between colon cancer and CF, and the vital importance of early screening in this recorded webinar. CFRI Executive Director, Siri Vaeth, was joined by community members Anna Payne, Thomas Horal, and Elyse…

People with cystic fibrosis have 5-10 times the risk of developing colon cancer (25-30 times the risk post-transplant). Learn about the connection between colon cancer and CF, and the vital importance of early screening in this recorded webinar. CFRI Executive Director, Siri Vaeth, was joined by community members Anna Payne, Thomas Horal, and Elyse…

CF impacts people of every race and ethnicity. Due to the misperception of CF as a disease impacting only those of European descent, many individuals go years without a diagnosis. In this moving film, CF community members share their experiences and their commitment to advocating for increased awareness on diversity, equity and inclusion among the …

Dr. Stephen Aller, Associate Professor at the Department of Pharmacology and Toxicology at the University of Alabama in Birmingham, presents results from CFRI-funded research on the role of CFTR Arginine-933 in FDA-approved drug potentiation. His team used cryo-electron microscopy (cryo-EM) to visualize high-quality structures with limited quantiti…

Dr. Stephen Aller, Associate Professor at the Department of Pharmacology and Toxicology at the University of Alabama in Birmingham, presents results from CFRI-funded research on the role of CFTR Arginine-933 in FDA-approved drug potentiation. His team used cryo-electron microscopy (cryo-EM) to visualize high-quality structures with limited quantiti…

Dr. Kenichi Okuda, a Research Associate at Marsico Lung Institute at University of North Carolina at Chapel Hill, presents results from CFRI-funded research on pathways maintaining basal mucin and CFTR-mediated fluid secretion in the human distal airway. He argues that airway cells are a therapeutic target for molecular therapy for CFTR function re…

Dr. Kenichi Okuda, a Research Associate at Marsico Lung Institute at University of North Carolina at Chapel Hill, presents results from CFRI-funded research on pathways maintaining basal mucin and CFTR-mediated fluid secretion in the human distal airway. He argues that airway cells are a therapeutic target for molecular therapy for CFTR function re…

Dr. Ahmet Uluer, a medicine and pediatric trained pulmonologist and Director of the Adult Cystic Fibrosis Program at the combined Boston Children’s Hospital and Brigham & Women’s Hospital Adult Cystic Fibrosis Center, gives an overview of the impact of and risk associated with aging for people with CF, including GI cancers, complications associated…

Lucy Barnes, Matthew DeFina, and Carl Robinson, three adults with CF who are also parents, share their individual paths to parenthood. Moderated by Mary Helmers, the discussion explores panelists’ experiences with reproductive health discussions with their CF care providers; their partners’ key roles; finding balance with parenting, working and man…

Dr. Deepika Polineni, Cystic Fibrosis Center Director and Associate Professor in the Department of Pediatrics, Division of Allergy and Pulmonary Medicine at Washington University in St. Louis, provides a comprehensive overview of messenger ribonucleic acid (mRNA) therapy as a novel therapeutic option for CF. She discusses early studies of safety an…

Dominic Quagliozzi is a captivating and renowned artist living with cystic fibrosis and the recipient of a double lung transplant. He works within several mediums including painting, drawing, as well as performance and video art. In Part Two, Dominic shares a more in-depth look into his works, including the motivation and reasoning in the physical …

Dominic Quagliozzi is a captivating and renowned artist living with cystic fibrosis and the recipient of a double lung transplant. He works within several mediums including painting, drawing, as well as performance and video art. In Part One, Dominic shares how he first started on his journey expressing his lived experience through art, and how art…

Dominic Quagliozzi is a captivating and renowned artist living with cystic fibrosis and the recipient of a double lung transplant. He works within several mediums including painting, drawing, as well as performance and video art. In Part Two, Dominic shares a more in-depth look into his works, including the motivation and reasoning in the physical …

Dominic Quagliozzi is a captivating and renowned artist living with cystic fibrosis and the recipient of a double lung transplant. He works within several mediums including painting, drawing, as well as performance and video art. In Part One, Dominic shares how he first started on his journey expressing his lived experience through art, and how art…

Dr. Amanda Bruce, Associate Professor and licensed clinical psychologist at the University of Kansas Medical Center, and Dr. Deborah Friedman, licensed clinical psychologist in the Massachusetts General Hospital Department of Psychiatry and Assistant Professor of Psychology at Harvard Medical School, discuss the use of cognitive-behavioral therapy …

Dr. Carlos Milla, Professor of Pediatrics at Stanford University School of Medicine and the Director of the Stanford Cystic Fibrosis Center, and Dr. Nam Soo Joo, Senior Research Scientist in the Department of Pediatrics at Stanford University, present results from CFRI-funded research on improving CF airway mucociliary clearance. They discuss resul…

Dr. Zachary Sellers, Assistant Professor of Pediatrics and the Associate Chair of Research in Pediatric Gastroenterology at Stanford University, presents results from CFRI-funded research on targeting IRBIT to correct bicarbonate secretory defects in CF. His work aims to identify new ways to treat CF-associated gastrointestinal complications regard…

Dr. Steven Jonas, Assistant Professor in the Department of Pediatrics at the UCLA David Geffen School of Medicine and California NanoSystems Institute, presents results from CFRI-funded research on nanotechnologies for CF gene therapy. He presents a suite of tools and methods that could serve as building blocks for establishing CF gene therapy solu…

Dr. Naren Kumar, post-doctoral fellow in the lab of Dr. Suzanne Fleiszig at the University of California Berkeley, presents results from CFRI-funded research on intracellular diversification of Pseudomonas aeruginosa in chronic lung infections. He discusses findings from experiments using live timelapse imaging and molecular methods to determine ge…

Dr. Sriram Vaidyanathan, a principal investigator in the Center for Gene Therapy at the Abigail Wexner Research Institute at Nationwide Children’s Hospital in Ohio, presents results from CFRI-funded research on airway stem cell transplantation into the sinuses using fibrinogen scaffolds. This presentation was part of CFRI's 36th National CF Educati…

Dr. Paul Bollyky, an Associate Professor and an infectious disease physician at Stanford University, presents results from CFRI-funded research on the development of phage therapy for antimicrobial-resistant infections in CF. He discusses a novel approach to design effective, broad-spectrum phage cocktails that relies on combining phages with diffe…

Carl Robinson and Matt DeFina discuss the rewards and challenges of raising children when one has CF. Moderated by Mary Helmers, RN, they describe their different paths to parenthood, and answer questions. This episode is a recording of a webinar from September 2023. If you watched this episode, please tell us what you think at https://www.surveymo…

Carl Robinson and Matt DeFina discuss the rewards and challenges of raising children when one has CF. Moderated by Mary Helmers, RN, they describe their different paths to parenthood, and answer questions. This episode is a recording of a webinar from September 2023. If you watched this episode, please tell us what you think at https://www.surveymo…

Dr. Matthew Porteus, Sutardja Chuk Professor of Definitive and Curative Medicine and a Professor in the Department of Pediatrics at Stanford University, gives a comprehensive overview of advances in gene therapy for cystic fibrosis. He discusses different approaches, outcomes of recent studies, as well as next steps to obtain FDA clearance to test …

Dr. Matthew Porteus, Sutardja Chuk Professor of Definitive and Curative Medicine and a Professor in the Department of Pediatrics at Stanford University, gives a comprehensive overview of advances in gene therapy for cystic fibrosis. He discusses different approaches, outcomes of recent studies, as well as next steps to obtain FDA clearance to test …

Dr. Susanna McColley, Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago, and Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine, explains how CF clinical trial enrollment, new…

Dr. Susanna McColley, Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago, and Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine, explains how CF clinical trial enrollment, new…

In this third podcast of a three-part series, Dr. Ali Akbar provides an update on efforts in Pakistan to raise CF awareness and improve access to diagnosis and care. He shares current needs to advance momentum to save lives. As Dr. Akbar shares, cystic fibrosis is significantly under diagnosed in Pakistan. Dr. Akbar’s vision is that no one will be …

In this third podcast of a three-part series, Dr. Ali Akbar provides an update on efforts in Pakistan to raise CF awareness and improve access to diagnosis and care. He shares current needs to advance momentum to save lives. As Dr. Akbar shares, cystic fibrosis is significantly under diagnosed in Pakistan. Dr. Akbar’s vision is that no one will be …

In this inspiring podcast, Katie O'Grady, from Boston, Massachusetts and living with cystic fibrosis, describes her lifelong love of running, and the impact this has had on her health. In 2019, Katie joined a group of runners with CF, recruited by Dr. Ahmet Uluer, that ran the Boston Marathon. Recognizing that running is not for everyone, Katie sha…

In this inspiring podcast, Katie O'Grady, from Boston, Massachusetts and living with cystic fibrosis, describes her lifelong love of running, and the impact this has had on her health. In 2019, Katie joined a group of runners with CF, recruited by Dr. Ahmet Uluer, that ran the Boston Marathon. Recognizing that running is not for everyone, Katie sha…

Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Ali Akbar shares insights from his decades of dedication and work to improve the lives of those with cystic fibrosis in Pakistan. Meet the medical teams and families in Pakistan that Dr. Akbar supports through CF clinics and education to improve medical care. Ga…

Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Ali Akbar shares insights from his decades of dedication and work to improve the lives of those with cystic fibrosis in Pakistan. Meet the medical teams and families in Pakistan that Dr. Akbar supports through CF clinics and education to improve medical care. Ga…

In this podcast, Dr. Xinlun Tian, MD, Professor, Dept. of Pulmonary and Critical Care Medicine, Peking Union Medical College Hospital, shares the history and phenotypes of cystic fibrosis (CF), current conditions regarding the high amount of projected undiagnosed cases of CF in China, and shares the immediate needs to facilitate closing the gap amo…

In this podcast, Dr. Xinlun Tian, MD, Professor, Dept. of Pulmonary and Critical Care Medicine, Peking Union Medical College Hospital, shares the history and phenotypes of cystic fibrosis (CF), current conditions regarding the high amount of projected undiagnosed cases of CF in China, and shares the immediate needs to facilitate closing the gap amo…

Copay accumulator programs are increasingly embedded within insurance plans, creating significant financial hardship for patients. Copay accumulator programs allow payers to accept patients' financial assistance to access medications, but then do not apply these funds to the patients' deductible and out of pocket expenses. Many people face insurmou…

Copay accumulator programs are increasingly embedded within insurance plans, creating significant financial hardship for patients. Copay accumulator programs allow payers to accept patients' financial assistance to access medications, but then do not apply these funds to the patients' deductible and out of pocket expenses. Many people face insurmou…

Part 1 of 3 - Meet Dr. Ali Akbar, Consultant Respiratory Pediatrician, Birmingham, UK and hear his story of overcoming obstacles to provide needed care for families living with cystic fibrosis in Pakistan. Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Akbar has dedicated his career to improving the lives an…

Part 1 of 3 - Meet Dr. Ali Akbar, Consultant Respiratory Pediatrician, Birmingham, UK and hear his story of overcoming obstacles to provide needed care for families living with cystic fibrosis in Pakistan. Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Akbar has dedicated his career to improving the lives an…

People with cystic fibrosis have 5 to 10 times the rates of colon cancer as the general public. Those post transplant have over 25 times the risk. No one has worked harder to raise awareness of the higher risk of colon cancer among those with cystic fibrosis than Anna Payne. Anna, who lives with CF and was diagnosed with Stage 4 colon cancer at the…

People with cystic fibrosis have 5 to 10 times the rates of colon cancer as the general public. Those post transplant have over 25 times the risk. No one has worked harder to raise awareness of the higher risk of colon cancer among those with cystic fibrosis than Anna Payne. Anna, who lives with CF and was diagnosed with Stage 4 colon cancer at the…

Skin cancer is a risk for everyone, but in particular for those with cystic fibrosis post-transplant. Learn valuable tips to protect yourself from Dr. Jennifer Wang, MD, Clinical Assistant Professor of Dermatology at Stanford, who specializes in melanoma, non-melanoma skin cancers, and cutaneous lymphomas. Dr. Wang takes special interest in skin ca…

Skin cancer is a risk for everyone, but in particular for those with cystic fibrosis post-transplant. Learn valuable tips to protect yourself from Dr. Jennifer Wang, MD, Clinical Assistant Professor of Dermatology at Stanford, who specializes in melanoma, non-melanoma skin cancers, and cutaneous lymphomas. Dr. Wang takes special interest in skin ca…

Rod Spadinger and Joshua Bauder share the inspirational work of CF Vests Worldwide, which ships vests to individuals with CF in developing countries, who have no access to vests and medical equipment. Josh, who lives in Thailand, shares his experiences caring for his young daughter with CF. Meet the people whose lives are changed thanks to this org…