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
Men with CF and Infertility: The Science, The Options, The Hope.
Men with CF and Infertility: The Science, The Options, The Hope. Pete Proimos is an entrepreneur, a chronic illness advocate, and the founder of the Filotimo Foundation, a nonprofit dedicated to suppo...
6 Huhti 49min
Hope for the final ten percent, Dr. Alan Cohen, Arcturus
Three decades caring for patients with CF, that’s Dr. Alan H. Cohen. His experience continues to shape everything he does today. As a pediatric pulmonologist (board-certified) , he has walked alongsid...
30 Maalis 48min
Spreading Joy in a Small World: Julie McCaffrey’s Story
I’ve known Julie McCaffrey for years. She lives about 40 minutes from me, in Romeo, Michigan. Julie and her husband, Curtis, are raising four daughters, and their oldest, Jenna—now 20—lives with cysti...
23 Maalis 28min
