by Laura Bonnell | Aug 21, 2023 | Podcasts
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 talking about 7 thousand plus rare diseases, which include cystic...
by Laura Bonnell | Aug 14, 2023 | Podcasts
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 financial need is greater than we can give, or if we don’t cover a...
by Laura Bonnell | Aug 7, 2023 | Podcasts
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 a lifelong CF fund-raising volunteer in 1976, when he helped put...
by Guest Author | Jul 31, 2023 | Podcasts
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 community, but had no direct connection. The people with CF and their...
by Laura Bonnell | Jul 17, 2023 | Podcasts
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 the University of Michigan graduate is happily in love. But until...
by Laura Bonnell | Jul 10, 2023 | Podcasts
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 Uncles, friends and you get the picture. We have a small, tight knit...
