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
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:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, 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 well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.