by Laura Bonnell | Sep 5, 2023 | Podcasts
If you want to meet Jerry in person, I encourage you to attend our Night of Hope Gala on September 9th. You’ll be able to talk with Jerry about anything that is on your heart. You’ll be so inspired, like I am every single time I see him or talk with him. If you’re not...
by Laura Bonnell | Aug 28, 2023 | Podcasts
Dr. Durhane Wong-Rieger is the President and CEO for the Canadian Organization for Rare Disorders. She is involved and Chair to many committees and organizations. She is also an author, lecturer and trainer. She is the perfect person to talk with about making...
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...
