Riding the Waves: Melissa Pappageorgas’ Transplant Journey

August 1, 2018

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.

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CF, Music and Finding Oneself: Tess Dunn

August 1, 2018

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.

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

August 1, 2018

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.

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

August 1, 2018

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.

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

June 27, 2018

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.

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

June 27, 2018

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.

 

Watch Now:

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

June 27, 2018

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.

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

June 27, 2018

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. 

Recorded by Brandon Delgado and Alana de Ocampo.

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

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Navigating Grief and Growth - Sydney Altano (Video)

May 31, 2018

Gianna Altano was an amazing young woman who lost her battle with CF at the age of 23. Sydney Altano, her mother, shared Gianna's story at the 2018 Embrace Retreat for mothers of children and adults with cystic fibrosis. Through the most unimaginable loss, Sydney has navigated pain and growth, and her personal story is both moving and inspiring.

CF Community Voices is made possible through the support of Vertex Pharmaceuticals, Chiesi USA and Gilead Sciences.

Watch Now:

Navigating Grief and Growth - Sydney Altano (Audio)

May 31, 2018

Gianna Altano was an amazing young woman who lost her battle with CF at the age of 23. Sydney Altano, her mother, shared Gianna's story at the 2018 Embrace Retreat for mothers of children and adults with cystic fibrosis. Through the most unimaginable loss, Sydney has navigated pain and growth, and her personal story is both moving and inspiring.

CF Community Voices is made possible through the support of Vertex Pharmaceuticals, Chiesi USA and Gilead Sciences.

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