by Laura Bonnell | Mar 6, 2023 | Podcasts
People getting married who have CF. We don’t hear it happening very often. We’ve always been told that people with CF should not be in the same room, unless they are 6 feet apart. This is impossible to do if you have children with the disease, and of course if you...
by Laura Bonnell | Feb 27, 2023 | Podcasts
Does your CF clinic offer a place for you to express your concerns and successes about CF? The University of Michigan Medical Center started a zoom program during the pandemic that allowed its adult patients with CF to discuss what’s on their mind. The topics...
by Laura Bonnell | Feb 20, 2023 | Podcasts
Imagine having children with CF and living in another country. In your country they don’t have any CF medications, and maybe only a handful of people have been diagnosed with the disease. Even testing equipment is difficult to come by. Doctors in your country...
by Laura Bonnell | Feb 13, 2023 | Podcasts
Indubious. Live Indubiously. Indubians. What am I talking about? The band Indubious was founded by two brothers, 38 years old Evan Burton and 41 year old Skip Burton. Both happen to have CF. They recently released an incredible documentary about their CF journey. Both...
by Laura Bonnell | Feb 6, 2023 | Podcasts, Uncategorized
Almost everyone in the CF community knows who Andy Lipman is and all the contributions he has made. Andy, and his older sister Wendy were born with cystic fibrosis. Wendy died when she was only 16 days old. The Lipman family founded The Wish for Wendy Foundation, in...
by Laura Bonnell | Jan 30, 2023 | Podcasts
Dr. Harutai Kamalaporn sees 12 of the 30 patients diagnosed with CF in Thailand. The challenges she faces are: lack of medications, equipment and sweat chloride tests at all three hospitals. Dr. Kamalaporn continues to advocate for more testing machines. Some...
