Living With Cystic Fibrosis

The Rare Disease Advisory Council, (RDAC) has passed in at least 25 states so far.  This is a bi-partisan effort to give voice to people and their families who are living with a rare disease.  We're t...

21 Aug 202330min

Healthwell is a foundation that helps people pay bills that impact 90 different disease groups. They cover what insurance does not.  The Bonnell Foundation will refer people to Healthwell when the fin...

14 Aug 202327min

You will want to learn more about Bob Emmelkamp after this podcast, I promise!I feel like Bob is everywhere and supportive of everyone.Without a DNA connection to cystic fibrosis, Bob Emmelkamp became...

7 Aug 202349min

Melodie Ramone and I met on Twitter, before the pandemic. Melodie was supporting all my posts and I wondered why, did she have a CF connection?  She was, as it turns out, supportive of the CF communit...

31 Jul 202335min

Who will want to take on a person with CF?  That is the question many women born with the disease think about after high school.Megan Bauer thought about it a lot. Until she met Alec.  At 26 years old...

17 Jul 202330min

The CF community is a small one. It’s made up of 40,000 people with the disease in the U.S.  When you add two parents to the mix that’s 80,000 parents, then there are grandparents, siblings, Aunt and ...

10 Jul 202349min

This is a love story about two people passionate about entertainment, writing and each other.In 2016 Clement ‘Clem’ Souyri, moved from Versaille, France to the United States. Clem is a lawyer who spec...

5 Jul 202334min

54 years ago when Canadian, Lisa Bentley was born, enzymes weren't even in pill form. Diagnosed at age 20, Lisa was already in the midst of figuring out her life as a teacher and later, a world famous...

26 Jun 202340min