The CFRI CF Community Voices Podcast

Stretch Your Budget: CF Food Expenses – A Panel Discussion (Audio)

The hardships of eating on a restricted budget are widespread, and food insecurity is three times higher within the cystic fibrosis community than the national average. Join Arek Puzia, CPA, CFP, father of a child with CF, Tiffany Raffino, LCSW, MSW, from UCSF, and Georgia Brown, advocate and an adult with CF, for a panel discussion on strategies to cope with increased food costs. Learn tips to ease the burden of grocery expenses and food prep, while creating nutritious meals for you or your family.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Stretch Your Budget: CF Living Expense – Resources (Video)

In this second podcast in our Stretch Your Budget series, Tiffany Raffino, LCSW, MSW, CF Social Worker at UCSF, connects families impacted by cystic fibrosis with resources to help ease financial burdens and elevate quality of life. Tiffany addresses health insurance, medication assistance, financial assistance, transportation, caregiving support, peer support, recreational activities and wish-granting organizations. Tiffany recognizes the multi-faceted challenges faced by children and adults with cystic fibrosis (CF) and their families to manage treatments, cope with stress, and balance health care with school and/or work life, and provides valuable tools to address them.

Tiffany was chosen by Cystic Fibrosis Research Institute as its 2019 CF Champion.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Stretch Your Budget: CF Living Expense – Resources (Audio)

In this second podcast in our Stretch Your Budget series, Tiffany Raffino, LCSW, MSW, CF Social Worker at UCSF, connects families impacted by cystic fibrosis with resources to help ease financial burdens and elevate quality of life. Tiffany addresses health insurance, medication assistance, financial assistance, transportation, caregiving support, peer support, recreational activities and wish-granting organizations. Tiffany recognizes the multi-faceted challenges faced by children and adults with cystic fibrosis (CF) and their families to manage treatments, cope with stress, and balance health care with school and/or work life, and provides valuable tools to address them.

Tiffany was chosen by Cystic Fibrosis Research Institute as its 2019 CF Champion.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Unleashed Stories: CF Pet Perspectives (Video)

In this podcast, you’ll meet the pets that make a big difference in the lives of adults living with cystic fibrosis and hear stories of how these furry friends provide unconditional love, support, and acceptance. The CDC acknowledges that the bond between people and their pets can increase fitness, lower stress, and bring happiness to their owners. CFRI warmly thanks Crystal Collier, Elyse Elconin Goldberg, Anna Payne, Missy Peterson, and Maggie Williamson for their participation.

CFRI’s 2024 CF Community Voices is made possible to date through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Unleashed Stories: CF Pet Perspectives (Audio)

In this podcast, you’ll meet the pets that make a big difference in the lives of adults living with cystic fibrosis and hear stories of how these furry friends provide unconditional love, support, and acceptance. The CDC acknowledges that the bond between people and their pets can increase fitness, lower stress, and bring happiness to their owners. CFRI warmly thanks Crystal Collier, Elyse Elconin Goldberg, Anna Payne, Missy Peterson, and Maggie Williamson for their participation.

CFRI’s 2024 CF Community Voices is made possible to date through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Colon Cancer and CF: Panel (Video)

People with cystic fibrosis have 5-10 times the risk of developing colon cancer (25-30 times the risk post-transplant). Learn about the connection between colon cancer and CF, and the vital importance of early screening in this recorded webinar.

CFRI Executive Director, Siri Vaeth, was joined by community members Anna Payne, Thomas Horal, and Elyse Elconin-Goldberg, adults with CF who shared their personal experiences with colon cancer screening, prevention and diagnosis.

Colon Cancer and CF: Panel (Audio)

People with cystic fibrosis have 5-10 times the risk of developing colon cancer (25-30 times the risk post-transplant). Learn about the connection between colon cancer and CF, and the vital importance of early screening in this recorded webinar.

CFRI Executive Director, Siri Vaeth, was joined by community members Anna Payne, Thomas Horal, and Elyse Elconin-Goldberg, adults with CF who shared their personal experiences with colon cancer screening, prevention and diagnosis.

Recursos de asistencia a paciente

La guía integral de recursos de CFRI proporciona información sobre varios programas ofrecidos por nuestros socios.  Escuche a Alicia Maciel, miembro de la comunidad de CFRI, mientras explica dónde encontrar y como utilizar la guía de recursos de asistencia al paciente de CFRI.  Manténgase informado de cómo acceder a fuentes de apoyo financiero, asistencia de copagos para acceder a medicamentos, becas para personas con FQ y sus familiares, y mucho más.  

Cancer de Colon y Fibrosis Quistica

¿Sabía que las personas con FQ tienen entre 5 y 10 veces más probabilidades de desarrollar cáncer de colon?

Las personas con FQ tras un trasplante de pulmón tienen un riesgo entre 25 a 30 veces mayor, y los portadores de FQ también tienen más probabilidades de desarrollar cáncer de colon. Escuche a Alicia Maciel, miembro de la comunidad de CFRI, hablar sobre la hoja informativa del cáncer de colon. Conozca los riesgos y hable con su médico hoy sobre la prevención. 

Diversity, Equity and Inclusion in Cystic Fibrosis

CF impacts people of every race and ethnicity. Due to the misperception of CF as a disease impacting only those of European descent, many individuals go years without a diagnosis. In this moving film, CF community members share their experiences and their commitment to advocating for increased awareness on diversity, equity and inclusion among the CF and general population.

CFRI’s Faces of CF Diversity and Inclusion Program is sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, Chiesi USA, and Genentech, with additional translation support provided by Genentech.