The CFRI CF Community Voices Podcast

Rare Within Rare: A Community Conversation

CFRI, in partnership with the National Organization of African Americans with Cystic Fibrosis (NOAACF), hosted a live webinar featuring members of CFRI's CF Diversity and Inclusion Committee who shared their rare within rare experiences, including challenges faced and opportunities moving forward.

This event was made possible through support from Vertex Pharmaceuticals, Genentech, Gilead Sciences, and Chiesi USA.

Pelvic Floor Weakness: Where Can I Start?

Nicole Irizarry, DPT, provides demonstrations of techniques to address pelvic floor weakness and urinary incontinence. This is the second in a five-part interactive webinar series on various aspects of physical therapy. The session demonstrates exercises, so dress comfortably and get ready to move.

CFRI's CF Wellness Initiative is sponsored by Translate Bio, Viatris, Ionis Pharmaceuticals, Vertex Pharmaceuticals, and private donors.

Cystic Fibrosis Advocacy and Awareness

CFRI works tirelessly to raise awareness of CF and advocate for access to quality care and therapies. The organization is committed to supporting innovative CF research to find a cure, while offering education and support programs to improve our community's health and quality of life. Watch and be inspired. Please join us in our efforts! www.cfri.org

Filmed and edited by Brandon Delgado.

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

Faces of CF: Diversity, Inclusion & Community

CF impacts people of every race and ethnicity, including members of the African American, East Asian, South Asian and Hispanic/Latinx communities. 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.

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

Anna Payne‘s Colon Cancer Crusade

In this podcast, Anna Payne, 34 years old and living with cystic fibrosis, shares her harrowing journey as she battles stage-4 colon cancer. People with cystic fibrosis have 5 to 10 times the rates of colon cancer than the general population, and the GI symptoms that are a hallmark of CF often mask the symptoms of colon cancer. In sharing her story Anna hopes to motivate others with CF to seek earlier colonoscopies to prevent colon cancer. "This is my story," she says, "but it does not need to be yours."

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

CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Viatris.

Anna Payne‘s Colon Cancer Crusade (Audio)

In this podcast, Anna Payne, 34 years old and living with cystic fibrosis, shares her harrowing journey as she battles stage-4 colon cancer. People with cystic fibrosis have 5 to 10 times the rates of colon cancer than the general population, and the GI symptoms that are a hallmark of CF often mask the symptoms of colon cancer. In sharing her story Anna hopes to motivate others with CF to seek earlier colonoscopies to prevent colon cancer. "This is my story," she says, "but it does not need to be yours."

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

CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Viatris.

Cystic Fibrosis in the East Asian Community

CF impacts people of every race and ethnicity, including members of the East Asian community, yet 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.

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

CFRI-Funded Research In Action

Since CFRI awarded its first CF research grant to the legendary Paul Quinton, PhD, in 1977, CFRI has provided over $10 million to support innovative research at medical and academic institutions across the United States. In this film, current and recently funded CF researchers share about their work, the importance of continued focus on CF research, and the role CFRI has played in furthering their scientific projects and the search for a CF cure.

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

CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Viatris.

CFRI-Funded Research in Action (Audio)

Since CFRI awarded its first CF research grant to the legendary Paul Quinton, PhD, in 1977, CFRI has provided over $10 million to support innovative research at medical and academic institutions across the United States. In this film, current and recently funded CF researchers share about their work, the importance of continued focus on CF research, and the role CFRI has played in furthering their scientific projects and the search for a CF cure.

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

CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Viatris.

Cystic Fibrosis in the Hispanic/Latinx Community (English)

CF impacts people of every race and ethnicity, including members of the Hispanic/Latinx community, yet 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.

CFRI’s Faces of CF Diversity and Inclusion Program is sponsored by Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, and Genentech.