Welcome to Bowen & Brinlee’s Brigade- we are so grateful that you have taken the time to read a bit about us... whether you chose to sign up to fundraise, donate, or send prayers and well wishes- WE APPRECIATE YOU!!!
Bowen and Brinlee are a fierce duo. They have DDF508, the most common gene mutation causing CF. Bowen was diagnosed at 3 weeks old from the new born screening. Brinlee was diagnosed from CVS testing in utero. They are considered pancreatic insufficient, which requires them to take pancreatic enzymes (25-30 per day) to help properly absorb nutrients and digest their food. Bowen has been very excited to have his sister to do his "breathers" with. Every day they nebulize 3 breathing treatments (more if sick), along with 40 minutes spent using their therapy vests. Orkambi is curently the only CF Modulator approved for children 2 and up, and works on a cellular level to help repair the underlying cause of CF. Bowen has been on the medication for over 2 years now and we are very grateful that he has not experienced any negative side effects and has been gaining weight! The most noticeable difference we see is his ability to fight off colds much faster, which has been huge to his overall health! Brinlee just started Orkambi in January, so far she is doing great as well! We are very excited for the new bigger/ better CF modulator (Trikafta) which will be available to Bowen when he turns 6!!!
Somedays it is still difficult to grasp the fact that we have two children with this terrible disease. We have had the privilege of attending many CF events and with each one we are filled with just a bit more HOPE for what their future WILL look like. Having a child with a life-shortening disease is terrifying but there is truly so much work being done to help change the face of CF. Even with all this extra junk, Bowen and Brinlee are happy and thriving children.
With help from amazing people like you, The Cystic Fibrosis Foundation is able to fund the research we need to find our CURE! WE ARE SO CLOSE!!!!Please consider making a tax-deductible donation or even better, join our team! You can choose to walk virtually if the 5K is not for you!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for all of them.
Thank you from the bottom of our hearts-Brian, Leesa, Greyson, Bowen & Brinlee
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
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