The CF community is a small, tight knit group. There are 40-thousand patients with CF in the U.S., and double the amount of parents. many of us in the CF community know each other, or have heard of one another.
I did a podcast about CF Vests Worldwide, and todays guest, Medora Frei, reached out to Rod Spadenger to tell him how much she enjoyed the Living with CF podcasts. Medora listened to every podcast we have produced. She wrote the nicest note to me after Rod connected us. She said our podcasts have “helped her, validated her and inspired her”.
So I researched her a little and thought, she has to be on this podcast! Medora was not diagnosed until she was 18 years old, and she’s only been living with the knowledge of what having CF means for 10 years. I am honored to share her story with you.
Medora says: “The “Living with Cystic Fibrosis” podcast by the Bonnell Foundation has been instrumental in my journey as a person with CF. My CF diagnosis came later in the life at age 18. Through Laura’s wonderful guests and information shared, I’ve learned so much more about CF and have been validated in my experiences with the disease. It has also helped me feel a greater sense of community and inspired me to share more about my own journey. The podcast has also shared tangible resources for those of us with CF and other chronic diseases, and I have directly been helped by a few resources and organizations they’ve shared about. I have listened to each episode of the podcast and am greatly inspired by the work The Bonnell Foundation is doing within the CF community. I would encourage everyone to help out in any way they can”!
Medora released a book that is part art book/part abbreviated memoir; it’s called “These Are My Flowers: My Story of Composting Trauma into Colorful Art.” You can check out her website or follow her on Instagram.