The CFRI CF Community Voices Podcast

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.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.

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 gene therapy approaches in CF patients. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.

CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.

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 gene therapy approaches in CF patients. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.

CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.

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, newborn screening, and global availability create inequities. She also discusses how policies and practice must advance so that every person with CF has a fair and just opportunity to attain their highest level of health. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.

CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.

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, newborn screening, and global availability create inequities. She also discusses how policies and practice must advance so that every person with CF has a fair and just opportunity to attain their highest level of health. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.

CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.

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 left behind in receiving a diagnosis and care, regardless of where one is born. This is part 3 of a 3-part series.

Click here to connect with the Pakistan Cystic Fibrosis Support Network: / @pakistancysticfibrosissupp1959

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.

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 left behind in receiving a diagnosis and care, regardless of where one is born. This is part 3 of a 3-part series.

Click here to connect with the Pakistan Cystic Fibrosis Support Network: / @pakistancysticfibrosissupp1959

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.

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 shares her tips for starting and staying with an exercise program, and how to discuss this topic with your CF care team.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.