Rare, But Not Invisible: Chrisy and Dr. Kingzett talk advocacy.
Chrisy and Dr. Kingzett, two women I met when we were all trying to raise our rare voices a little louder. Christine “Chrisy” Klavitter and Dr. Kristen Kingzett are both rare disease advocates, but mo...
8 Kesä 58min
Failure, Grit, and Breakthroughs with Dr. Tom Kaiser
“Behind every breakthrough are countless failures no one ever sees—but that’s exactly what makes progress possible.” Dr. Thomas Kaiser. When I have scientists on the podcast: they’re some of the coole...
1 Kesä 42min
Christopher Cornejo, late diagnosis with CF
Living Fully with CF: Christopher Cornejo’s Journey from Diagnosis to Avatar This fast-moving and deeply engaging conversation features Christopher Cornejo, who brings a fresh and powerful voice to ...
25 Touko 36min
No Time to Wait: Beth Vanstone’s Fight for Access via Advocacy
A mother, advocate and one woman's global fight for access. Beth Vanstone is working to ensure rare disease patients don’t have to wait for the treatments they need to survive. Sometimes the most powe...
18 Touko 45min
Bridging Two Countries, One Mission: Cesar and Nora Hernandez
Bridging Two Countries, One Mission: Cesar and Nora Hernandez Fight for Spanish-Speaking CF Families “When Alex was diagnosed, we felt fear and responsibility. If we had access to information in Spani...
11 Touko 42min
Turning Grief Into Purpose: Margarete Cassalina’s CF Journey
Finding Strength After Loss: A Conversation with Margarete Cassalina I first met Margarete Cassalina when we were hosted for dinner by Bob Emmelkamp at the North American Cystic Fibrosis Conference (N...
4 Touko 56min
Education, connection, and community, bringing the CF community together.
Education, connection, and community are at the heart of our CF community. On Saturday, April 18th from 11:00 a.m. to 1:30 p.m. we gathered at the Next Step Gallery in Ferndale. Set in a bright galle...
27 Huhti 42min
Learning, Leading, Listening: Julie Eichenberg of BreatheStrong CF
“Being a CF aunt has shaped so much of my life. Now I get the opportunity to turn that love and connection into helping even more people at Breathe Strong CF." Julie Dunn Eichenberg didn’t just find ...
13 Huhti 35min
