My Team CF Story

Welcome to our Surf for CF Bowie's Brigade Page!

Bowie is 9 years old and the years just keep on getting better!!! There are still a lots of things we have to do to keep Bowie healthy, but we use to have to add more and more. However, since Bowie started Trikafta, things have been pretty stable! Trikafta is a new drug that was developed directly from the CF foundation research that events like this have supported in the past. We had high hopes when Bowie started taking it in August 2021, since people have done so well with it. But, since Bowie's mutation is so rare, we weren't sure what to expect. Fast forward three years and it continues to way exceeded our expectations. Bowie's last pulmonary function tests remain within normal range and his pancreas IS WORKING AGAIN!!!! Second to a cure, this is about the best news we could get. This may not seem like a big deal to you all, but this means around 45 less pills a day for Bowie. And for us, it means we don't have to worry about Bowie facing the long term effects of pancreatic disease, such as CF related diabetes, liver disease, and bowel disease.

Trikafta would not have been developed without the support from the CF foundation. We know you all get solicited for money or support for many good causes and we want you to know that the past support of the CF foundation has made a HUGE difference in this case! We have been and are continually eternally grateful for all the past support of Bowie's Brigade and Surf for CF!

But, there are still many CF patients with mutations that Trikafta does not help. There is still no cure and the lives of people with CF are still cut far too short.

Bowie is amongst the 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 are participating in Surf for CF for all them and hope you will support us in our efforts. We are helping add tomorrows to the lives of people living with cystic fibrosis. We are taking on this challenge to make sure our son lives the life we always imagined he would live.

Please join us at Surf for CF 2024 on September 21st at La Jolla Shores!

If you can't join us, please help me reach my fundraising goal by donating to our Surf for CF fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.