The CFRI CF Community Voices Podcast
CFRI Advocates in Action (Video)

CFRI Advocates in Action (Video)

August 6, 2019

In May, 2019, a group of CF advocates, including individuals with CF, parents of children with CF, and CF clinicians, gathered in Sacramento, California, to meet with their state assembly members and senators and raise awareness of CF and the challenges experienced by those living with the disease, including access to therapies and care. The day culminated with the Senate passing a resolution declaring May to be Cystic Fibrosis Awareness Month in the State of California. In this video, advocates share their reasons for participating in this impactful day.

Filmed and edited by Brandon Delgado.
CF Community Voices is generously sponsored by Vertex Pharmaceuticals, Gilead Sciences, and Chiesi USA.

Break The Limits by Unwritten Stories | https://soundcloud.com/unwritten-stories
Music promoted by https://www.free-stock-music.com
Creative Commons Attribution-ShareAlike 3.0 Unported
https://creativecommons.org/licenses/by-sa/3.0/deed.en_US

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CFRI Advocates in Action (Audio)

CFRI Advocates in Action (Audio)

August 6, 2019

In May, 2019, a group of CF advocates, including individuals with CF, parents of children with CF, and CF clinicians, gathered in Sacramento, California, to meet with their state assembly members and senators and raise awareness of CF and the challenges experienced by those living with the disease, including access to therapies and care. The day culminated with the Senate passing a resolution declaring May to be Cystic Fibrosis Awareness Month in the State of California. In this video, advocates share their reasons for participating in this impactful day.

Filmed and edited by Brandon Delgado.
CF Community Voices is generously sponsored by Vertex Pharmaceuticals, Gilead Sciences, and Chiesi USA.

Break The Limits by Unwritten Stories | https://soundcloud.com/unwritten-stories
Music promoted by https://www.free-stock-music.com
Creative Commons Attribution-ShareAlike 3.0 Unported
https://creativecommons.org/licenses/by-sa/3.0/deed.en_US

Alan Verkman, MD/PhD - CF Researcher Extraordinaire

Alan Verkman, MD/PhD - CF Researcher Extraordinaire

August 3, 2019

Alan Verkman, MD, PhD, has changed the face of cystic fibrosis therapies. For over 30 years, Dr. Verkman, a Professor of Medicine and the Director of the CF Research Development Program at UC San Francisco. has advanced our understanding of the disease. At CFRI's 32nd National CF Education Conference, Dr. Verkman received the Paul Quinton Cystic Fibrosis Research Legacy Award. In this film, Dr. Verkman gives a tour of his lab at UC San Francisco, while sharing an update on his work.
Filmed and edited by Brandon Delgado.
CFRI Community Voices is generously sponsored by Vertex Pharmaceuticals, Gilead Sciences and Chiesi USA.

Watch Now:
Alan Verkman, MD/PhD - CF Researcher Extraordinaire

Alan Verkman, MD/PhD - CF Researcher Extraordinaire

August 3, 2019

Alan Verkman, MD, PhD, has changed the face of cystic fibrosis therapies. For over 30 years, Dr. Verkman, a Professor of Medicine and the Director of the CF Research Development Program at UC San Francisco. has advanced our understanding of the disease. At CFRI's 32nd National CF Education Conference, Dr. Verkman received the Paul Quinton Cystic Fibrosis Research Legacy Award. In this film, Dr. Verkman gives a tour of his lab at UC San Francisco, while sharing an update on his work.
Filmed and edited by Brandon Delgado.
CFRI Community Voices is generously sponsored by Vertex Pharmaceuticals, Gilead Sciences and Chiesi USA.

Herbs and Oils: Applications in CF - Dr. Russell Wise

Herbs and Oils: Applications in CF - Dr. Russell Wise

May 22, 2019

Russell Wise, PharmD, BCPPS, of Stanford Children's Health, discusses the use of herbal therapies and essential oils as a complementary therapy for cystic fibrosis. Dr. Wise addresses the growing use of herbal supplements, vitamins and essential oils by those with CF. He highlights those products which may be of benefit, while giving cautionary tips to ensure that those using these therapies are purchasing from sources with some form of quality control.

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

Filmed by Brandon Delgado.

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Cystic Fibrosis and the Benefits of Essential Oils

Cystic Fibrosis and the Benefits of Essential Oils

May 22, 2019

Jane Mitchell, mother of a daughter with cystic fibrosis, shares her experience using essential oils as a complementary therapy for her daughter Hannah, as well as for her entire family. She shares what oils have helped for specific symptoms, and addresses the importance of selecting quality brands to ensure safety.

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

Filmed by Brandon Delgado.

Watch Now:
Herbs and Oils: Applications in CF - Dr. Russell Wise (Audio)

Herbs and Oils: Applications in CF - Dr. Russell Wise (Audio)

May 22, 2019

Russell Wise, PharmD, BCPPS, of Stanford Children's Health, discusses the use of herbal therapies and essential oils as a complementary therapy for cystic fibrosis. Dr. Wise addresses the growing use of herbal supplements, vitamins and essential oils by those with CF. He highlights those products which may be of benefit, while giving cautionary tips to ensure that those using these therapies are purchasing from sources with some form of quality control.

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

Filmed by Brandon Delgado.

CF and the Benefits of Essential Oils (Audio)

CF and the Benefits of Essential Oils (Audio)

May 22, 2019

Jane Mitchell, mother of a daughter with cystic fibrosis, shares her experience using essential oils as a complementary therapy for her daughter Hannah, as well as for her entire family. She shares what oils have helped for specific symptoms, and addresses the importance of selecting quality brands to ensure safety.

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

Filmed by Brandon Delgado.

Five Feet Apart Discussion 5 - Favorite Scene (Video)

Five Feet Apart Discussion 5 - Favorite Scene (Video)

April 16, 2019

CFRI hosted an online Town Hall Discussion on the film "Five Feet Apart," during which participants from around the U.S. joined in via Zoom. The discussion was broken into five topics. The full recording is available on our YouTube CF Community Voices playlist, but in this fifth episode, we discuss our favorite scenes from the film and why they resonated.

Sponsored by Vertex Pharmaceuticals, Gilead Sciences and Chiesi USA.

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Five Feet Apart Discussion 4 - Medical Inaccuracies (Video)

Five Feet Apart Discussion 4 - Medical Inaccuracies (Video)

April 16, 2019

CFRI hosted an online Town Hall Discussion on the film "Five Feet Apart," during which participants from around the U.S. joined in via Zoom. The discussion was broken into five topics. The full recording is available on our YouTube CF Community Voices playlist, but in this fourth episode, as "CF insiders" we explore what drove us a bit crazy in terms of medical inaccuracies in the film.

Sponsored by Vertex Pharmaceuticals, Gilead Sciences and Chiesi USA.

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