The CFRI CF Community Voices Podcast

Ouch! Living with Pain in Cystic Fibrosis - Elaine Chen, MD - Audio

Both acute and chronic pain are common in people with CF, and can significantly impact quality of life and adherence to therapies. In this presentation, Dr. Chen describes some of the causes for pain CF, and strategies for managing pain. A variety of causes exist for pain in CF, which can be related to complications of CF, treatments for CF, or unrelated to CF. Dr. Chen reviews a range of strategies for managing pain that includes a multi-disciplinary approach.

Bridging the Gap Between Isolation & Social Connection - Chelsea Toth, DSW - Audio

Medical guidelines recommend strict separation of individuals with CF to reduce the risk of cross-infection. With the loss of opportunities for in-person socialization, many with CF experience social isolation. Dr. Toth discusses the impacts upon social isolation upon the mental health of those with CF, and strategies to address them.

History & Future of CFTR Modulators - Alan Verkman, MD, PhD - Audio

The first “potentiators” of mutant CFTRs, which rescue their defective chloride channel function, were identified by high-throughput screening and reported by Dr. Verkman’s lab in 2003, and in 2005 they reported the first “correctors” of defective cellular processing of the deltaF508 CFTR mutant. Dr. Verkman provides a comprehensive overview of the history and future of CFTR modulators, advances in “CFTR-agnostic” therapies, and other hopes for transformative CF therapeutic options.

Riding the Waves: Melissa Pappageorgas’ Transplant Journey

Melissa Pappageorgas is a 33-year-old woman with cystic fibrosis. Diagnosed as a teenager with CF, Melissa enjoyed relatively good health into her twenties. As her health initially declined, Melissa found both physical and mental strength in physical exercise – specifically surfing. In 2015 Melissa had a double lung transplant. Her recovery has not been easy, but once again, Melissa is finding strength in the waves.

Filmed and recorded by Brandon Delgado and Alana de Ocampo.

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

CF, Music and Finding Oneself: Tess Dunn

Tess Dunn is a 23-year-old singer/songwriter who has cystic fibrosis. In this podcast, she shares her CF journey, including the challenges of adolescence and the role that music played in helping her to regain her focus and emotional strength. A seven-year vetaran of West Coast Vans Warped Tour shows, Tess has released four albums and when possible, uses her music as an opportunity to raise awareness of CF and chronic illness. She also speaks of the importance of friends and family in coping with the challenges of the disease.

Filmed and recorded by Brandon Delgado and Alana de Ocampo.

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

CF, Music and Finding Oneself: Tess Dunn (Audio)

Tess Dunn is a 23-year-old singer/songwriter who has cystic fibrosis. In this podcast, she shares her CF journey, including the challenges of adolescence and the role that music played in helping her to regain her focus and emotional strength. A seven-year vetaran of West Coast Vans Warped Tour shows, Tess has released four albums and when possible, uses her music as an opportunity to raise awareness of CF and chronic illness. She also speaks of the importance of friends and family in coping with the challenges of the disease.

Filmed and recorded by Brandon Delgado and Alana de Ocampo.

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

Riding the Waves: Melissa Pappageorgas’ Transplant Journey (Audio)

Melissa Pappageorgas is a 33-year-old woman with cystic fibrosis. Diagnosed as a teenager with CF, Melissa enjoyed relatively good health into her twenties. As her health initially declined, Melissa found both physical and mental strength in physical exercise – specifically surfing. In 2015 Melissa had a double lung transplant. Her recovery has not been easy, but once again, Melissa is finding strength in the waves.

Filmed and recorded by Brandon Delgado and Alana de Ocampo.

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

Living the Dream: CF, Ultimate Frisbee & Jeremy Kharrazi (Video)

Jeremy Kharrazi is living the dream, playing professional Ultimate Frisbee with the San Jose Spiders. His coach and teammates did not know he had CF until someone saw that Jeremy was named the Boomer Esiason Foundation March 2018 Athlete of the Year. Prior to a game against the Los Angeles Aviators, Jeremy sat down with us to talk about Ultimate, living with CF, and what inspires him.

Film and Sound by Brandon Delgado and Alana de Ocampo.

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

Up On the Roof: Raising a Successful Adult with CF - Ann Robinson (Video)

Ann Robinson is well known to the national CF community. Mother to Carl, who has CF, and the first Executive Director to be hired by CFRI, Ann has spent decades mentoring parents facing the recent diagnosis of their children with cystic fibrosis. In this personal video, Ann shares what helped her to be a strong advocate for Carl, who is now happily married, a father, and employed in a field he loves. 

Film and Sound by Brandon Delgado and Alana de Ocampo.

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

 

Living the Dream: CF, Ultimate Frisbee & Jeremy Kharrazi (Audio)

Jeremy Kharrazi is living the dream, playing professional Ultimate Frisbee with the San Jose Spiders. His coach and teammates did not know he had CF until someone saw that Jeremy was named the Boomer Esiason Foundation March 2018 Athlete of the Year. Prior to a game against the Los Angeles Aviators, Jeremy sat down with us to talk about Ultimate, living with CF, and what inspires him.

Recorded by Brandon Delgado and Alana de Ocampo.

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