CFRI’s Executive Director, Siri Vaeth is sunshine to me. She’s a dear friend.

We met after Siri took on her role with the Cystic Fibrosis Research Institute. I consider Siri a dear friend, and a mentor.  Siri is truly among the smartest people I know.  She is an advocate for her daughter Tess, who has CF,  and is an incredible advocate for the CF community.  If you need legislation explained to you, Siri can help you. She can put it in a way you'd understand.

In this insightful conversation, we explore the evolving landscape of the Cystic Fibrosis (CF) community. We share personal updates and discuss key advancements in treatment, while also addressing ongoing challenges faced by patients and families. Topics include the emotional weight of age milestones for those with CF, collaborative organizational support, and critical legislative issues impacting the rare disease community. The episode also delves into the growing cancer risks in CF, the importance of regular screenings, and the difficulties patients face with insurance coverage. Emphasizing the vital role of the Cystic Fibrosis Research Institute (CFRI), they highlight its efforts in advocacy, education, and psychosocial care. The discussion calls for increased participation in clinical trials, better funding for rare disease research, and greater awareness of diversity and the implications of late CF diagnoses.

"The CF fight is far from over. From cancer risks to access to care, this conversation is everything." Siri Vaeth.

To learn more about CFRI: https://www.cfri.org

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en