The CFRI CF Community Voices Podcast

Singing Saved My Life: Ashley Ballou Bonnema (Video)

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.

Singing Saved My Life: Ashley Ballou Bonnema (Audio)

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.

Nourishing a Family Through Disease - Leah Webb, MPH, CHC

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.

Nourishing a Family Through Disease - Leah Webb, MPH, CHC (Audio)

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.

Ally's Act: Legislation to Improve Hearing Healthcare (Video)

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.

Ally's Act: Legislation to Improve Hearing Healthcare (Audio)

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.

Ototoxicity In Persons with CF - Part 2

Ototoxicity impacts many people with cystic fibrosis due to the use of aminoglycosides to treat recurring lung infections. In this two-part webinar, three experts discuss this challenging condition: Ahmet Uluer, DO, MPH, Director of the Adult CF Program at Boston Children's Hospital and Brigham and Women’s Hospital; Angela Garinis, PhD, Audiologist at Oregon Health and Science University; Michael Doing, AuD, audiologist at the University of South Florida, and an adult with cystic fibrosis. In Part 2, they discuss ototoxicity screening and prevention, the management of ototoxicity and future treatments and clinical trials in progress. 

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.

Ototoxicity In Persons with CF - Part 1

Ototoxicity impacts many people with cystic fibrosis due to the use of aminoglycosides to treat lung infections. In this two-part webinar, three experts discuss this challenging condition: Ahmet Uluer, DO, MPH, Director of the Adult CF Program at Boston Children's Hospital and Brigham and Women’s Hospital; Angela Garinis, PhD, Audiologist at Oregon Health and Science University; Michael Doing, AuD, audiologist at the University of South Florida, and an adult with cystic fibrosis. In Part 1, they discuss the pathogenesis of CF and hearing loss, causes of and screening for ototoxicity.

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.

Ototoxicity In Persons with CF - Part 2 (Audio)

Ototoxicity impacts many people with cystic fibrosis due to the use of aminoglycosides to treat recurring lung infections. In this two-part webinar, three experts discuss this challenging condition: Ahmet Uluer, DO, MPH, Director of the Adult CF Program at Boston Children's Hospital and Brigham and Women’s Hospital; Angela Garinis, PhD, Audiologist at Oregon Health and Science University; Michael Doing, AuD, audiologist at the University of South Florida, and an adult with cystic fibrosis. In Part 2, they discuss ototoxicity screening and prevention, the management of ototoxicity and future treatments and clinical trials in progress. 

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.

Ototoxicity In Persons with CF - Part 1 (audio)

Ototoxicity impacts many people with cystic fibrosis due to the use of aminoglycosides to treat lung infections. In this two-part webinar, three experts discuss this challenging condition: Ahmet Uluer, DO, MPH, Director of the Adult CF Program at Boston Children's Hospital and Brigham and Women’s Hospital; Angela Garinis, PhD, Audiologist at Oregon Health and Science University; Michael Doing, AuD, audiologist at the University of South Florida, and an adult with cystic fibrosis. In Part 1, they discuss the pathogenesis of CF and hearing loss, causes of and screening for ototoxicity. 

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.