The CFRI CF Community Voices Podcast

PART 1 Belonging & Identity: Growing Up with Cystic Fibrosis - Isa Stenzel Byrnes, LCSW, MPH - Audio

Isa Stenzel Byrnes, social worker, co-author of the Power of Two, identical twin, adult with CF, double lung transplant recipient, Transplant Games medalist, and subject of a documentary film, shared her deep insights and inspiring perspectives on developing a sense of identity and belonging as a person with CF. This presentation was part of CFRI's 30th National Cystic Fibrosis Family Education Conference on July 30, 2017.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis Pharmaceuticals.

What to Expect When You're Expectorating: The Bugs and Drugs of CF - Lucas Hoffman, MD, PhD (Audio)

Lucas Hoffman, MD, PhD, from the University of Washington and Seattle Children’s Hospital, in Seattle, Washington, a noted expert on pathogens commonly found in the CF lung, discusses what is known - and not known - about these pathogens and their potential treatment. The full title of his talk: What to Expect When You're Expectorating - The Bugs and Drugs of CF Respiratory Infections. This presentation was made on July 29, 2017, at CFRI's 30th National Cystic Fibrosis Family Education Conference.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis Pharmaceuticals.

Lessons from a CF Cornerman - Ray Poole: Audio

Ray Poole, author of "Lessons from a CF Cornerman," shares the inspiring story of his wife's battle with cystic fibrosis, and the life saving double lung transplant that has changed their lives. This presentation was given at CFRI's 30th National Cystic Fibrosis Family Education Conference on July 28, 2017.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis Pharmaceuticals.

CF Research Update 2017: Crossing the Bridge to a Cure - John P. Clancy, MD (Audio)

John P. Clancy, MD, CF pulmonologist and researcher from Cincinnati Children’s Hospital, Cincinnati, Ohio provides a comprehensive overview of current cystic fibrosis therapies and potential new therapies that are advancing in the CF research pipeline. This presentation was part of CFRI's 30th National Cystic Fibrosis Family Education Conference on July 29, 2017.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis Pharmaceuticals.

CF Beyond the Lungs: The Role of Physical Therapy - Karen von Berg, DPT (Audio)

Karen von Berg, DPT, PT, Johns Hopkins School of Medicine, Baltimore, Maryland, gave a comprehensive overview of the vital role that physical therapy plays in the health and well-being of those with cystic fibrosis. This presentation was made on July 29, 2017, at CFRI's 30th National Cystic Fibrosis Family Education Conference.

Forty Years of CF Research Breakthroughs - Paul Quinton, PhD: Audio

Paul Quinton, PhD, presents on forty years of cystic fibrosis research breakthroughs at CFRI's 30th annual Cystic Fibrosis Family Education Conference, on July 29, 2017.
Dr. Quinton is Emeritus Nancy Olmstead Chair, Pediatric Respiratory Medicine, School of Medicine, UC San Diego, La Jolla, CA.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis Pharmaceuticals.

What Gets in the Way? Understanding & Supporting Treatment Adherence in CF - Kristin Riekert, PhD (Audio)

Kristin A. Riekert, PhD, an expert on health regimen adherence issues who is from The Johns Hopkins School of Medicine in Baltimore, Maryland elaborated on adherence barriers and strategies for success for members of the cystic fibrosis community. This presentation was given at CFRI's 30th National Cystic Fibrosis Family Education Conference on July 28, 2017.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis Pharmaceuticals.

Beyond Cystic Fibrosis: Adult Health Issues in CF - Cathy Chacon, RN (Audio)

Cathy Chacon, RN, BSN, presents at CFRI's 2017 National CF Family Education Conference on health issues impacting those with cystic fibrosis including bone health, diabetes, reproductive health, and cancer screening.
Ms. Chacon is the Adult CF Nurse Coordinator at National Jewish Health in Denver, Colorado. This presentation took place on July 29, 2017.

Sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis Pharmaceuticals.

Lessons from a CF Cornerman - Ray Poole, MBA

Ray Poole, author of "Lessons from a CF Cornerman," shares the inspiring story of his wife's battle with cystic fibrosis, and the life saving double lung transplant that has changed their lives. This presentation was given at CFRI's 30th National Cystic Fibrosis Family Education Conference on July 28, 2017.

Sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis Pharmaceuticals.

Forty Years of CF Research Breakthroughs - Paul Quinton, PhD

Paul Quinton, PhD, presents on forty years of cystic fibrosis research breakthroughs at CFRI's 30th annual Cystic Fibrosis Family Education Conference, on July 29, 2017.
Dr. Quinton is Emeritus Nancy Olmstead Chair, Pediatric Respiratory Medicine, School of Medicine, UC San Diego, La Jolla, CA.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, the Boomer Esiason Foundation, and Novartis Pharmaceuticals.