The CFRI CF Community Voices Podcast

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.

Individualized Nutrition Therapy for People with CF – Virginia Stallings, MD

Weight gain has historically been an issue for many individuals with cystic fibrosis, and nutritional status and lung function are closely linked. Dr. Virginia Stallings, a nutrition pediatrician and professor of pediatrics at Children’s Hospital of Philadelphia and University of Pennsylvania Perelman School of Medicine has worked in nutrition clinical care and research for more than 30 years. Dr. Stallings designed and led the NIH-funded study on Encala™ for people with cystic fibrosis. In this podcast she discusses pancreatic insufficiency and the reasons for poor nutrient absorption among many with CF, and the results of the clinical trials with Encala in improving nutritional status.

CF Community Voices is made possible through grants from Vertex Pharmaceuticals, Genentech, Chiesi USA and Viatris.

Please help us evaluate our podcast by completing this quick survey: https://www.surveymonkey.com/r/TMRP766

Individualized Nutrition Therapy for People with CF – Virginia Stallings, MD (Audio)

Weight gain has historically been an issue for many individuals with cystic fibrosis, and nutritional status and lung function are closely linked. Dr. Virginia Stallings, a nutrition pediatrician and professor of pediatrics at Children’s Hospital of Philadelphia and University of Pennsylvania Perelman School of Medicine has worked in nutrition clinical care and research for more than 30 years. Dr. Stallings designed and led the NIH-funded study on Encala™ for people with cystic fibrosis. In this podcast she discusses pancreatic insufficiency and the reasons for poor nutrient absorption among many with CF, and the results of the clinical trials with Encala in improving nutritional status.

CF Community Voices is made possible through grants from Vertex Pharmaceuticals, Genentech, Chiesi USA and Viatris.

Please help us evaluate our podcast by completing this quick survey: https://www.surveymonkey.com/r/TMRP766

Imagining the Impossible: post-podcast Q&A wtih Luanne McKinnon

In this follow-up to Luanne McKinnon's inspiring and insightful podcast, CFRI's Siri Vaeth and Stacie Reveles ask Luanne – artist, writer, curator, woman with CF, and transplant recipient – questions from podcast viewers. Imagining the Impossible - Holding the Miracle took viewers from Luanne's childhood in Dallas, where she was diagnosed with CF in 1969, through her many fascinating adventures culminating in her life-changing transplant at Stanford nearly 10 years ago.

Imagining the Impossible with Luanne McKinnon

In this inspiring and insightful podcast, Luanne McKinnon – artist, writer, curator, woman with CF, and transplant recipient takes viewers from Luanne's childhood in Dallas, where she was diagnosed with CF in 1969, through her many fascinating global adventures, culminating in her life-changing transplant at Stanford nearly 10 years ago. Imagining the Impossible - Holding the Miracle provides life lessons for all.

CF Community Voices is made possible through grants from Vertex Pharmaceuticals, Genentech, Chiesi USA and Viatris.

Please help us evaluate our podcast by completing this quick survey: https://www.surveymonkey.com/r/TMRP766