The CFRI CF Community Voices Podcast

Cystic fibrosis impacts people of all races and ethnicities. While more common among people of European descent, it is estimated that 1 in 10,000 people of South Asian origin have CF, while exponentially more are carriers. Due to the misperception that CF does not occur within the South Asian community, misdiagnoses and late diagnoses are common. In this film, members of CFRI's community share their experiences and expertise to raise vital CF awareness.

Part of CFRI’s Faces of CF ~ Diversity and Inclusion Program, this film was made possible through grants from Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, and Genentech.

Film produced by Brandon Delgado.

In this latest Q and A session, Rick Moss, MD, addresses questions related to vaccines, the recent CDC announcement regarding mask wearing, and what activities the CF community can feel safer participating in. This 15th podcast with Dr. Moss was recorded May 13, 2021.

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

Thanks to our sponsors, Vertex Pharmaceuticals, Chiesi USA, Genentech, Viatris, and Gilead Sciences.

In this latest Q and A session, Rick Moss, MD, addresses questions related to vaccines, the recent CDC announcement regarding mask wearing, and what activities the CF community can feel safer participating in. This 15th podcast with Dr. Moss was recorded May 13, 2021.

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

Thanks to our sponsors, Vertex Pharmaceuticals, Chiesi USA, Genentech, Viatris, and Gilead Sciences.

Ashley Ballou Bonnema, professional vocalist, founder and executive director of the nonprofit Breathe Bravely, and adult with cystic fibrosis, discusses the organization's flagship program, sINgSPIRE. This innovative approach to battling CF through the art of singing has inspired countless individuals with CF to find their voice. This is part-two of a two-part podcast. In this, part two, Ashley shares the incredible impact this program has had across the country and globe. Watch and be inspired to sing.

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

Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.

Ashley Ballou Bonnema, professional vocalist, founder and executive director of the nonprofit Breathe Bravely, and adult with cystic fibrosis, discusses the organization's flagship program, sINgSPIRE. This innovative approach to battling CF through the art of singing has inspired countless individuals with CF to find their voice. This is part-two of a two-part podcast. In this, part two, Ashley shares the incredible impact this program has had across the country and globe. Watch and be inspired to sing.

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

Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.

Ashley Ballou Bonnema, is a professional vocalist from Sioux Falls, South Dakota, head of a private voice studio, and founder and executive director of Breathe Bravely – a nonprofit organization dedicated to giving voice to cystic fibrosis.  As an adult with CF, Ashley is a passionate advocate for our community. She created Breathe Bravely’s flagship program, sINgSPIRE, an innovative approach to contending with CF through the art of singing. This is a two-part podcast. In this, part one, Ashley shares her very personal, very moving story of life with CF, and how singing saved her life. 

 

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

 

Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.

Ashley Ballou Bonnema, is a professional vocalist from Sioux Falls, South Dakota, head of a private voice studio, and founder and executive director of Breathe Bravely – a nonprofit organization dedicated to giving voice to cystic fibrosis.  As an adult with CF, Ashley is a passionate advocate for our community. She created Breathe Bravely’s flagship program, sINgSPIRE, an innovative approach to contending with CF through the art of singing. This is a two-part podcast. In this, part one, Ashley shares her very personal, very moving story of life with CF, and how singing saved her life. 

 

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

 

Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.

Leah Webb, Certified Health Coach, author, and mother of two children - one with cystic fibrosis, and one with food allergies - shares her passion for healthy eating, and its direct impact on health. She is the author of "The Grain-Free, Sugar-Free, Dairy-Free Family Cookbook: Simple and Delicious Recipes for Cooking with Whole Foods on a Restrictive Diet." She focuses on increasing nutrient dense foods while sharing strategies for making shifts toward a healthier mindset and body.

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

Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.

Leah Webb, Certified Health Coach, author, and mother of two children - one with cystic fibrosis, and one with food allergies - shares her passion for healthy eating, and its direct impact on health. She is the author of "The Grain-Free, Sugar-Free, Dairy-Free Family Cookbook: Simple and Delicious Recipes for Cooking with Whole Foods on a Restrictive Diet." She focuses on increasing nutrient dense foods while sharing strategies for making shifts toward a healthier mindset and body.

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

Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.

Melissa Tumblin, Executive Director of the Ear Community Organization, discusses Ally's Act - federal legislation that has been introduced in 2021 to improve hearing health care for those needing cochlear implants or bone anchored hearing aids. As hearing loss is not uncommon for members of the CF community due to frequent aminoglycoside use, this legislation is relevant for many.