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
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
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.
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.
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.
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.
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.
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.
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.
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.
