Milestones, Medicine, and the CF Community with Siri Vaeth
04/07/25 • 53 min
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: [email protected]
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
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: [email protected]
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
Previous Episode
Aaron Trumm: living his best life!
I love that I was able to bump into Aaron Trumm via an email. He reached out to check in about our scholarship program for college. We only award grants to undergrad students, but I was intrigued by all I learned about him.
Aaron has CF, he is post-transplant, he started a recording label, he plays the piano and wraps, And he worked with the man known as the Lion of Zimbabwe. And he’s going to law school in the Fall.
We have a lot to talk about!
To get in touch with Aaron:
A music production education brand:
https://recordinglikemacgyver.com
This site Aaron says is disappearing soon! https://nquit.com
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: [email protected]
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
Next Episode
From Bulky to Breakthrough: The Future of Airway Clearance
From Clunky to Cutting-Edge: The Evolution of Airway Clearance with Nicole Dunn
When our daughters first received their vest machines, they felt like they weighed a hundred pounds and had to be plugged into the wall. The vests didn’t fit well—riding high in the armpits and leaving much to be desired in comfort and function. Fast forward 25 years, and everything has changed.
In this episode, Laura talks with Nicole Dunn, Senior Market Development and Education Manager at Tactile Medicaland an expert on the AffloVest. With a strong background as a registered respiratory therapist and a deep passion for respiratory education, Nicole is at the forefront of innovation in airway clearance therapy.
Together, they dive into the evolution of the AffloVest—from its design improvements to the company's mission to provide accessible, life-changing therapy for people with chronic respiratory diseases like cystic fibrosis. Nicole shares how patient feedback has shaped product development, the impact of CF modulators on airway clearance, and how community engagement plays a vital role in Tactile Medical’s approach.
This episode is full of inspiration, real-life success stories, and a look at how far we’ve come in improving comfort, mobility, and quality of life for people with CF.
To learn more about Tactile Medical please visit: https://tactilemedical.com
To learn more about AffloVest: https://affloVest.com
For questions: [email protected]
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: [email protected]
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
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