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Nicole Kohr

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Storytelling is the most important part of patient advocacy. With that said, my name is Nicole Kohr. I am a 29-year-old cystic fibrosis patient, a bilateral lung transplant recipient, a writer, and an award-winning patient leader.

I was always involved in the arts as both a performer and a writer. I wrote and performed in my elementary school plays, attended theater camp, trained with Broadway professionals, and starred in dozens of community theater productions. However, starting at age 5, I was hospitalized for weeks at a time to receive intravenous (IV) antibiotics. To pass the time and get my creative juices flowing, I would write songs, stories, and plays.

When applying for college, I entered the Abbvie Scholarship Contest and won with a poem called "Fall Risk". I majored in Public Relations and wrote essay after essay, speech after speech. When I worked in Princeton Theological Seminary's Development office, I simultaneously published my first book, Two Cents. It was flawed, but I was proud to author a children's book.

In March of 2019, I was evaluated for a bilateral lung transplant. I wrote to the Cystic Fibrosis Foundation and begged them to share a play that was collecting dust on my computer—a new musical comedy titled "Fall Risk The Musical". On the day before my wedding, May 31, 2019, I received a $10,000 grant from the Cystic Fibrosis Foundation to produce "Fall Risk". On June 1, my husband and I married. I was 79 pounds, cranked full of medication, and my 6-liter oxygen tank lovingly named O2D2 was dressed as a flower girl. I was transplanted 14 days later, and "Fall Risk" was in pre-production by Aug. 1, 2019.

My second publication, My Pants, is the story of my childhood. My mother would bring me from doctor to doctor, but I was always misdiagnosed. I wanted to advocate for other pediatric patients and their families who are living through a similar situation. I even launched a virtual fashion show based on My Pants, called "The My Pants Baby Fashion Show".

Since then, I've spent my time advocating through storytelling. I joined the Society of Children's Books Writers and Illustrators, the Dramatist Guild, and the Cystic Fibrosis Foundation Board. I am a columnist for Cystic Fibrosis News Today and Cystic-Fibrosis.com. I am the Founder and Executive Director of Coliecreations.org, whose mission is to bring visibility to cystic fibrosis as "Fall Risk" moves from script to stage.

I wasn't sure if people would care about my story, but after a yearlong glimpse into the life of a chronically ill patient, the world is reopening with a drive and a passion. This rare understanding begs for works like My Pants and "Fall Risk The Musical."

Website: https://youtube.com/channel/UCqFIe8YcqEIPKWpzOckCzcA

Twitter: https://twitter.com/cystic4real