The CFRI CF Community Voices Podcast

Colonoscopies Save Lives: An Update from Anna Payne

People with cystic fibrosis have 5 to 10 times the rates of colon cancer as the general public. Those post transplant have over 25 times the risk. No one has worked harder to raise awareness of the higher risk of colon cancer among those with cystic fibrosis than Anna Payne. Anna, who lives with CF and was diagnosed with Stage 4 colon cancer at the age of 34, provides an update on her journey and a reminder to get a life-saving colonoscopy.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

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

Colonoscopies Save Lives: An Update from Anna Payne (Audio)

People with cystic fibrosis have 5 to 10 times the rates of colon cancer as the general public. Those post transplant have over 25 times the risk. No one has worked harder to raise awareness of the higher risk of colon cancer among those with cystic fibrosis than Anna Payne. Anna, who lives with CF and was diagnosed with Stage 4 colon cancer at the age of 34, provides an update on her journey and a reminder to get a life-saving colonoscopy.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

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

Skin Cancer 101: How To Spot It, How To Treat It, How To Beat It - Jennifer Wang, MD

Skin cancer is a risk for everyone, but in particular for those with cystic fibrosis post-transplant. Learn valuable tips to protect yourself from Dr. Jennifer Wang, MD, Clinical Assistant Professor of Dermatology at Stanford, who specializes in melanoma, non-melanoma skin cancers, and cutaneous lymphomas. Dr. Wang takes special interest in skin cancer surveillance and treatment in high-risk populations, such as cystic fibrosis and solid organ transplant recipients.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

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

Skin Cancer 101: How To Spot It, How To Treat It, How To Beat It - Jennifer Wang, MD (Audio)

Skin cancer is a risk for everyone, but in particular for those with cystic fibrosis post-transplant. Learn valuable tips to protect yourself from Dr. Jennifer Wang, MD, Clinical Assistant Professor of Dermatology at Stanford, who specializes in melanoma, non-melanoma skin cancers, and cutaneous lymphomas. Dr. Wang takes special interest in skin cancer surveillance and treatment in high-risk populations, such as cystic fibrosis and solid organ transplant recipients.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

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

CF Vests Worldwide: Changing Lives One Vest at a Time (Video)

Rod Spadinger and Joshua Bauder share the inspirational work of CF Vests Worldwide, which ships vests to individuals with CF in developing countries, who have no access to vests and medical equipment. Josh, who lives in Thailand, shares his experiences caring for his young daughter with CF. Meet the people whose lives are changed thanks to this organization's mission-driven work.  

CF Community Voices is made possible to date through grants from Chiesi USA, Genentech, Gilead Sciences, and Viatris.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

 

CF Vests Worldwide: Changing Lives One Vest at a Time (Audio)

Rod Spadinger and Joshua Bauder share the inspirational work of CF Vests Worldwide, which ships vests to individuals with CF in developing countries, who have no access to vests and medical equipment. Josh, who lives in Thailand, shares his experiences caring for his young daughter with CF. Meet the people whose lives are changed thanks to this organization's mission-driven work.  

CF Community Voices is made possible to date through grants from Chiesi USA, Genentech, Gilead Sciences, and Viatris.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

Nicholas Kelly - Rise Up For A Dream

Nicholas Kelly, dietitian, motivational speaker, author, DJ, artist, poet, dancer, advocate, and CF Warrior, shares the secrets to his freestyling "sauce.” Enjoy his inspirational freestyle artistry entitled “Rise Up For A Dream”, and learn how you can empower and express your unique voice.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

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

2022 CFRI Advocacy Film

Cystic fibrosis (CF) has been diagnosed in over 40,000 people in the United States. This brief film highlights symptoms, the diversity of our community, and the work of the Cystic Fibrosis Research Institute (CFRI) to ensure all people with cystic fibrosis have access to needed therapies.  

This film was made possible through educational grants from Vertex Pharmaceuticals, AbbVie, Gilead Sciences, Ionis Pharmaceuticals, and Genentech.

Enfrentando al Diagnostico - Alicia Maciel y Gina Serrato

Enfrentar un diagnóstico de fibrosis quística puede ser extremadamente aterrador y desafiante. En este conmovedor podcast, dos madres de niños con fibrosis quística, Alicia Maciel y Gina Serrato, hablan sobre sus experiencias cuando se enteraron de que sus hijos tenían FQ, y lo que les ha ayudado a desarrollar resiliencia y fortaleza personal a lo largo del viaje para garantizar la mejor calidad de vida de sus hijos.

Por su generoso apoyo, un agradecimiento especial a: Vertex Pharmaceuticals, Genentech, Chiesi USA, Gilead Sciences, y Viatris.

Oral Health and CF - Dr. Martina Hayes

Oral health is key to the overall health of individuals living with cystic fibrosis. In this podcast, recorded at the 2022 CF Adult Retreat, Dr. Martina Hayes, Associate Professor at the Dublin Dental University Hospital in Ireland, discusses what is known about CF and oral health; explains links between CF and enamel defects, tooth decay, gum disease, and more; and offers ways to improve oral health.

If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY

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