My Great Strides Story
Colleen Veitengruber
Fundraising for Central Illinois Great Strides 2026
Colleen Veitengruber
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
What is Cystic Fibrosis?
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.
Colleen's Cystic Fibrosis Story
I was born in 1988, diagnosed with CF at birth. I am extremely lucky to have a relatively healthy childhood in regards to my CF. The real challenge came when I turned 18 and went off to college. My adult CF doctor at the time was a huge motivator and inspiration for me. I also met Tim during my freshman year of college which turned out to be another big reason for me to stay on top of my treatments. In 2010, we got married after I graduated college, and knew we wanted to have a family together = my main motivation. I kept up with all of my treatments and added exercise into my routine to help get me in the best shape possible to potentially carry a child.
In August of 2013, I was able to begin taking Kalydeco (one of the first modulators approved by the FDA to target the specific CF gene). This twice daily pill not only increased my lung function, but it helped my lungs stay stable and helped me gain the weight I needed and I struggled to gain my entire life. In August 2014, we welcomed our first child, Anna, into the world. I had a very healthy pregnancy and delivery. In 2018 and 2021 our sons, Calvin and Adrian, joined our family as well. Again, I was very lucky to have healthy pregnancies with them as well, although I was diagnosed with Cystic Fibrosis Related Diabetes in 2022 about a year after Adrian's pregnancy.
In October 2022, I switched from taking Kalydeco to Trikafta. Many CF patients were having better results with Trikafta, so my team and I decided it was worth trying. It has been truly life-changing! Three and a half years later, and my lung function is higher than it's been since I can remember, I don't cough, and I don't do any daily Vest or nebulizers (unless sick). I still take digestive enzymes with every meal/snack and still monitor my blood sugar closely (although my A1C is 5.2 = normal!). I have gained hours back with my family each day because of Trikafta and not having to do daily treatments. I NEVER would have thought this would be possible.
Even with this success, TRIKAFTA IS NOT A CURE and I still have Cystic Fibrosis. As I've gotten older, I have had a couple hospitalizations due to hemoptysis (coughing up blood) and one for a virus I was unable to kick with oral antibiotics. Also, as I get older, the more I use oral antibiotics, the more my body/lungs get resistant to them. CF is something I will live with for the rest of my life, but your donations are still so important. Your donations fund research for life-changing medications like Kalydeco and Trikafta. We still need a CURE and donations allow for research to get us that much closer!
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 is Cystic Fibrosis?
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.
Colleen's Cystic Fibrosis Story
I was born in 1988, diagnosed with CF at birth. I am extremely lucky to have a relatively healthy childhood in regards to my CF. The real challenge came when I turned 18 and went off to college. My adult CF doctor at the time was a huge motivator and inspiration for me. I also met Tim during my freshman year of college which turned out to be another big reason for me to stay on top of my treatments. In 2010, we got married after I graduated college, and knew we wanted to have a family together = my main motivation. I kept up with all of my treatments and added exercise into my routine to help get me in the best shape possible to potentially carry a child.
In August of 2013, I was able to begin taking Kalydeco (one of the first modulators approved by the FDA to target the specific CF gene). This twice daily pill not only increased my lung function, but it helped my lungs stay stable and helped me gain the weight I needed and I struggled to gain my entire life. In August 2014, we welcomed our first child, Anna, into the world. I had a very healthy pregnancy and delivery. In 2018 and 2021 our sons, Calvin and Adrian, joined our family as well. Again, I was very lucky to have healthy pregnancies with them as well, although I was diagnosed with Cystic Fibrosis Related Diabetes in 2022 about a year after Adrian's pregnancy.
In October 2022, I switched from taking Kalydeco to Trikafta. Many CF patients were having better results with Trikafta, so my team and I decided it was worth trying. It has been truly life-changing! Three and a half years later, and my lung function is higher than it's been since I can remember, I don't cough, and I don't do any daily Vest or nebulizers (unless sick). I still take digestive enzymes with every meal/snack and still monitor my blood sugar closely (although my A1C is 5.2 = normal!). I have gained hours back with my family each day because of Trikafta and not having to do daily treatments. I NEVER would have thought this would be possible.
Even with this success, TRIKAFTA IS NOT A CURE and I still have Cystic Fibrosis. As I've gotten older, I have had a couple hospitalizations due to hemoptysis (coughing up blood) and one for a virus I was unable to kick with oral antibiotics. Also, as I get older, the more I use oral antibiotics, the more my body/lungs get resistant to them. CF is something I will live with for the rest of my life, but your donations are still so important. Your donations fund research for life-changing medications like Kalydeco and Trikafta. We still need a CURE and donations allow for research to get us that much closer!
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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