by Laura Bonnell | Sep 18, 2023 | Podcasts
Asia Diaz is 27 years old and has CF. As an African American woman she was one of the many people diagnosis late in her life because some physicians believe incorrectly, that CF is a genetic disease that mainly impacts the white race. For this reason Asia was...
by Laura Bonnell | Sep 11, 2023 | Podcasts
Bean Corcoran, and Will Corcoran. Mother and son. I met Bean Corcoran when we were doing a science and innovation campaign, and we became friends! I learned a little bit about her son Will, who has CF. Bean is very involved in the CF community. She is the President of...
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...
