Nicole “Colie” Kohr was diagnosed with cystic fibrosis (CF) at the age of 5 and told she wouldn’t live to be 10.
Colie's Scrapbook
Fun Facts
What is cystic fibrosis?
Cystic fibrosis (CF) is a genetic disease that affects the lungs, pancreas, and other organs.
How does it affect these organs?
CF patients have mutated genes whose proteins cannot carry chloride to the cell’s surface. → This leads to an overproduction of thick, sticky mucus. → In the lungs, mucus acts like a magnet for bacteria. Hence, most CF patients are on routine antibiotics. → Many patients, including Colie, have undergone bilateral lung transplants.
How many people are affected?
According to cff.org, “There are close to 40,000 children and adults living with cystic fibrosis in the United States (and an estimated 105,000 people have been diagnosed with CF across 94 countries). CF can affect people of every racial and ethnic group.”
Is there a cure?
No. Part of Colie’s mission is to bring awareness to the disease. Hopefully, CF will stand for “cure found” in her lifetime.
To learn more about CF, visit cff.org.
Video Gallery
Additional Resources
Great Strides is a fun event hosted by the Cystic Fibrosis Foundation. Join Nicole’s team as a walker (virtually or in person!). Learn more here.
Nicole is a congressional captain for the Cystic Fibrosis Foundation. She’s spoken with many congresspeople during the last three March on the Hill events. Join Nicole’s team by texting your state abbreviation and district code (i.e. NC03) to 96387. *Message and data rates may apply. Text STOP to cancel/optout. Text HELP for help.
Support The Pasteur Act and other bills that breed antibiotics and fight antimicrobial resistance (AMR). Nicole partnered with Fight Infectious Disease to bring awareness to AMR.
Get paid to participate in clinical trials and surveys using Rare Patient Voice.
Join your local Cystic Fibrosis Chapter to take part in local events and receive the latest news. Nicole is the volunteer engagement chair of the Eastern/Central NC chapter.
Visit Mightywell and check out it’s latest patient-friendly products. (Use code NICOLEK10 at checkout for 10% off!)