Walk with our team to Cure Cystic Fibrosis
Ben's Buddies
Fundraising for Metro Detroit Great Strides 2026
Ben's Buddies
Dear Family and Friends,
Thank you for your years of generosity, love and support of Ben and our family. It’s official, this is Ben’s last year of high school. He just turned 18 on March 10th. When Ben was born, the life expectancy for someone with cystic fibrosis was mid-twenties. You read that right, 20 something years old. Our Ben is 18 now.
Because of your support for Great Strides, the average life expectancy of someone born TODAY, is 60 years old and event beyond. Ben will likely continue to live a normal life because of medical advancements you all have paid for and for that, our family is eternally grateful. But here’s the thing, Ben taking handfuls of pills daily, doing daily breathing treatments and occasionally being hospitalized is not the same as a cure.
The most dangerous moment in any fight is when others believe you’ve already won.
What does that mean? It means we need to continue taking bold steps forward. It means the modulators that give our family so much, are not end game. It means, we won’t stop until there’s a CURE.
Ben is getting ready to head off on his Senior Spring Break trip to Punta Cana at the end of March. We are thrilled for him to start at Oakland Community College this Fall. He wants to major in nursing. In lieu of a Graduation Party, we’re taking a trip to Japan to celebrate this next chapter in our lives.
Ben’s health has been overall good this year. He’s on a CFTR modulator called Trikafta, which helps correct the underlying cause of CF, but when we return, we are starting a new modulator called Alyftrek. This is the next generation of therapies for people with CF. It’s less pills, more effective and less side effects.
Your support fuels our dream of finding a cure for CF. The CF Foundation is a donor-supported nonprofit organization. They are taking bold steps in the health and well-being for people like Ben. 90% of the CF population takes a modulator like Ben but there around 10% (and counting) of people living with CF who cannot and even more who have side-effects with treatment and have to come off.
This year the CF Great Strides walk is Sunday May 3, 2026 at the Detroit Zoo. We need your help to meet our fundraising goal. Your generous gift will be used to help support the Foundation’s mission of finding a cure and improving the lives of those with CF. And, your gift is 100% tax deductible.
While the CF Foundation is constantly making progress to prolong the lives of those living with CF, our dream is to have Ben never have to take another pill, be in the hospital, do another breathing treatment and eventually be able to say, "I used to have CF."
With Gratitude,
Kati, Chris and Ben Pannecouck
Walk Details
Sunday, May 3, 2026
Detroit Zoo
Check In: 7:30 AM
Start Time: 8:30 AM
About CF and the CF Foundation
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.
Thank you for your years of generosity, love and support of Ben and our family. It’s official, this is Ben’s last year of high school. He just turned 18 on March 10th. When Ben was born, the life expectancy for someone with cystic fibrosis was mid-twenties. You read that right, 20 something years old. Our Ben is 18 now.
Because of your support for Great Strides, the average life expectancy of someone born TODAY, is 60 years old and event beyond. Ben will likely continue to live a normal life because of medical advancements you all have paid for and for that, our family is eternally grateful. But here’s the thing, Ben taking handfuls of pills daily, doing daily breathing treatments and occasionally being hospitalized is not the same as a cure.
The most dangerous moment in any fight is when others believe you’ve already won.
What does that mean? It means we need to continue taking bold steps forward. It means the modulators that give our family so much, are not end game. It means, we won’t stop until there’s a CURE.
Ben is getting ready to head off on his Senior Spring Break trip to Punta Cana at the end of March. We are thrilled for him to start at Oakland Community College this Fall. He wants to major in nursing. In lieu of a Graduation Party, we’re taking a trip to Japan to celebrate this next chapter in our lives.
Ben’s health has been overall good this year. He’s on a CFTR modulator called Trikafta, which helps correct the underlying cause of CF, but when we return, we are starting a new modulator called Alyftrek. This is the next generation of therapies for people with CF. It’s less pills, more effective and less side effects.
Your support fuels our dream of finding a cure for CF. The CF Foundation is a donor-supported nonprofit organization. They are taking bold steps in the health and well-being for people like Ben. 90% of the CF population takes a modulator like Ben but there around 10% (and counting) of people living with CF who cannot and even more who have side-effects with treatment and have to come off.
This year the CF Great Strides walk is Sunday May 3, 2026 at the Detroit Zoo. We need your help to meet our fundraising goal. Your generous gift will be used to help support the Foundation’s mission of finding a cure and improving the lives of those with CF. And, your gift is 100% tax deductible.
While the CF Foundation is constantly making progress to prolong the lives of those living with CF, our dream is to have Ben never have to take another pill, be in the hospital, do another breathing treatment and eventually be able to say, "I used to have CF."
With Gratitude,
Kati, Chris and Ben Pannecouck
Walk Details
Sunday, May 3, 2026
Detroit Zoo
Check In: 7:30 AM
Start Time: 8:30 AM
About CF and the CF Foundation
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.
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