My Great Strides Story
Elizabeth Armstrong
Fundraising for Louisville Great Strides
Elizabeth Armstrong
I will never forget the phone call we received on January 18, 2022. Caroline's newborn screening results had come back, and she was flagged for being positive for Cystic Fibrosis. I can't even put into words how gut-wrenching it is to find out your sweet baby will endure a life-long battle with health issues.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward - a cure for everyone with CF.
I did not know much about CF prior to Caroline's diagnosis. What I knew was that she would require a lot of medication and we would worry about her lungs. I have since learned it's so much more than a lung disease; it's a whole-body disease. We have been very fortunate over the past year because she has been eligible to take a modulator call Trikata, a drug that temporarily targets the underlying cause of CF. While it has helped her live a more normal life, she still takes multiple medications throughout the day. Her pancreas was damaged in utero, so she cannot eat fat-containing foods without taking a digestive enzyme before. You can imagine how tough that can be to keep up with, especially with a snacking toddler! She also has to eat a certain amount of fat when she takes Trikafta in the morning and evening because it works by attaching to the fat. That can be very stressful on us because 10g of fat can be tough to get a picky toddler to eat. Let's just say I love when she's up for a donut run in the morning!
There is currently no cure for cystic fibrosis and too many people with CF die young. I'm walking to help change that reality. The Cystic Fibrosis Foundation has been and continues to invest heavily in gene editing research. I believe that is the key to curing CF and many other genetic diseases.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward - a cure for everyone with CF.
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