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
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.