The CFRI CF Community Voices Podcast

Three Perspectives, One Purpose: Why Medicine Needs Memoir - Diane Shader Smith; Maryanne O’Hara; David Weill MD (audio)

Diane Shader Smith, Maryanne O'Hara and David Weill, will speak for the patient, the parent, and the provider respectively, and address the importance of memoir in medicine in the context of cystic fibrosis. Using David’s memoir, Exhale: Hope Healing and a Life in Transplant, Maryanne’s memoir, Little Matches: A Memoir of Grief and Light, and Mallory Smith’s memoir, Salt in My Soul: An Unfinished Life, they will discuss the role of narrative in medicine as it relates to the parent-provider relationship, bioethical issues affecting both privileged and underserved communities, systemic failings, scientific inquiry, and the role of palliative care from the time of diagnosis until end of life. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.

CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Getting to the After Times: CF and COVID in Year 2 - Richard Moss, MD (audio)

Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and retired Director of the Stanford Cystic Fibrosis Center, gives an update on key aspects of the pandemic currently relevant to CF: vulnerability to COVID in the CF community, transmission, vaccine availability and safety, breakthrough infections, variants, special considerations for the immunocompromised, and more. Dr. Moss reviews current evidence and recommendations, and gives a global outlook. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.

CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Dr. Francis Collins - Welcoming Remarks at CFRI's 34th National CF Education Conference

CFRI's 34 National Cystic Fibrosis Education Conference - "Illuminating the CF Journey" - took place virtually from July 30 to August 1, 2021. Francis Collins, MD, PhD, Director of the National Institutes of Health (NIH), delivered this welcoming address to the CF community via video.

The Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Dr. Francis Collins - Welcoming Remarks at CFRI's 34th National CF Education Conference (Audio)

CFRI's 34 National Cystic Fibrosis Education Conference - "Illuminating the CF Journey" - took place virtually from July 30 to August 1, 2021. Francis Collins, MD, PhD, Director of the National Institutes of Health (NIH), delivered this welcoming address to the CF community via video.

The Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Pride! Celebrating Our CF Community

Members of the cystic fibrosis and LGBTQIA community share their experiences and perspectives on life with CF, the challenges and deep rewards of coming out, and the importance of finding community. Pride Month is in June; Pride is year round.

Sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, Gilead Sciences, and Viatris.

Film edited by Brandon Delgado.

Pride! Celebrating Our CF Community (Audio)

Members of the cystic fibrosis and LGBTQIA community share their experiences and perspectives on life with CF, the challenges and deep rewards of coming out, and the importance of finding community. Pride Month is in June; Pride is year round.

Sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, Gilead Sciences, and Viatris.

Film edited by Brandon Delgado.

Cystic Fibrosis in the Asian Community - Sriram Vaidyanathan, PhD

In this informative podcast, Dr. Sriram Vaidyanathan discusses the incidence of cystic fibrosis among the Asian community, and research which indicates that CF incidence rates are far higher among South Asians than East Asians. Thanks to research conducted at Stanford, there is further evidence of the diversity of the cystic fibrosis community and the need for greater awareness among underrepresented communities and the medical community.

If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766​

CF Community Voices is sponsored by Chiesi USA, Genentech, Viatris, Gilead Sciences and Vertex Pharmaceuticals.

Edited by Brandon Delgado.

Cystic Fibrosis in the Asian Community - Sriram Vaidyanathan, PhD (Audio)

In this informative podcast, Dr. Sriram Vaidyanathan discusses the incidence of cystic fibrosis among the Asian community, and research which indicates that CF incidence rates are far higher among South Asians than East Asians. Thanks to research conducted at Stanford, there is further evidence of the diversity of the cystic fibrosis community and the need for greater awareness among underrepresented communities and the medical community.

If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766​

CF Community Voices is sponsored by Chiesi USA, Genentech, Viatris, Gilead Sciences and Vertex Pharmaceuticals.

Edited by Brandon Delgado.

Exhale: Hope, Healing & David Weill's Life in Transplant

David Weill, MD, formerly the director of Stanford's lung transplant program, discusses his insightful memoir, which presents an inside look at the world of high-stakes medicine and his recognition that he needed to step away from the front lines. Dr. Weill shares select readings from the book and responds to many viewer questions.

If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766​

Sponsored by Chiesi USA, Viatris, Genentech, Gilead Sciences, and Vertex Pharmaceuticals.

Exhale: Hope, Healing & David Weill's Life in Transplant (Audio)

David Weill, MD, formerly the director of Stanford's lung transplant program, discusses his insightful memoir, which presents an inside look at the world of high-stakes medicine and his recognition that he needed to step away from the front lines. Dr. Weill shares select readings from the book and responds to many viewer questions.

If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766​

Sponsored by Chiesi USA, Viatris, Genentech, Gilead Sciences, and Vertex Pharmaceuticals.