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 a year and we are very grateful that he has not experienced any negative side effects and he has even gained a little weight! The most noticeable difference we see is his ability to fight off colds much faster, which has been huge to his overall health! We are very excited for the new bigger/ better CF modulator (Trikafta) to become available for his age group!
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
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.