My Great Strides Story
Amanda Wagner
Amanda Wagner
I met my friend, Martha, in 2010 while we were working together for the Minnesota Wild. We quickly formed a friendship outside of just being co-workers. Eventually she told me that she had cystic fibrosis. I had heard of it, but didn’t know a whole lot about it. I did what you should never do and Googled🤦🏻♀️. WOOF.
What I learned was terrifying.
In 2010, the average life expectancy of someone born with CF in the early-mid 90s was about 30 years old. Martha was 17 at this point. On average, Martha had already lived half of her life. This made me so upset. How could this be?!
Thankfully, in 2019, Trikafta, a genetic modulator, was approved and Martha was eligible to take it. This breakthrough drug acts as a corrector for the genetic mutation (Thank you, science). Martha turned 30 in 2023, the average life expectancy of someone with CF when we met. Martha’s quality of life has improved dramatically since starting Trikafta. I’m honored to be able to work at the Cystic Fibrosis Foundation with Martha as my co-worker again, working for a cure together.
Today, the average life expectancy of someone born with CF is 61, up over 20 years compared to about a decade ago, and is only expected to increase.
Trikafta, while incredible and life changing to ~90% of the CF population, there are still 10% or so of those living with CF that cannot benefit from Trikafta and, ultimately, Trikafta isn’t a cure.
The mission of the Cystic Fibrosis Foundation has always been to find a cure. A cure will be expensive and that’s why fundraising is still so important.
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
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.
What I learned was terrifying.
In 2010, the average life expectancy of someone born with CF in the early-mid 90s was about 30 years old. Martha was 17 at this point. On average, Martha had already lived half of her life. This made me so upset. How could this be?!
Thankfully, in 2019, Trikafta, a genetic modulator, was approved and Martha was eligible to take it. This breakthrough drug acts as a corrector for the genetic mutation (Thank you, science). Martha turned 30 in 2023, the average life expectancy of someone with CF when we met. Martha’s quality of life has improved dramatically since starting Trikafta. I’m honored to be able to work at the Cystic Fibrosis Foundation with Martha as my co-worker again, working for a cure together.
Today, the average life expectancy of someone born with CF is 61, up over 20 years compared to about a decade ago, and is only expected to increase.
Trikafta, while incredible and life changing to ~90% of the CF population, there are still 10% or so of those living with CF that cannot benefit from Trikafta and, ultimately, Trikafta isn’t a cure.
The mission of the Cystic Fibrosis Foundation has always been to find a cure. A cure will be expensive and that’s why fundraising is still so important.
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
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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