My Breathe Team Story
Cambrey White
Cambrey White
My son, Rowland, who is currently three and a half, lives with Cystic Fibrosis, a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. In Rowland's short life so far he has had two five day hospitalizations, multiple trips to the ER, and takes seven different medications twice a day. His medication regimen takes about an hour in length in the morning and at night daily. This disease has not been easy for our family to navigate. Despite it all, Rowland truly is the most active, smiley, and happy boy! Unfortunately Cystic Fibrosis is a progressive disease so that means the disease will continue to get worse as he grows older. Rowland will not be defined by this disease, but the reality is that there is currently no cure. I feel that it is pertinent to share our family's experiences with CF so everyone can understand the complexities of living with this disease, and understand the urgency that exists to find a cure.
The Cystic Fibrosis Foundation has proven to make an impact on the lives of those living with CF. The Cystic Fibrosis Foundation has been thoughtfully funding scientific research that ultimately results in new medications for those living with CF--most recently modulators, a therapy that treats the underlying cause of the disease and has drastically improved the life expectancy of those living with CF. CF used to be considered a childhood disease because many people living with CF died as children, but now thanks to the CFF's investment into medical advancements and scientific research, the median life expectancy for those born in 2021 (when Rowland was born) is 65.
While this is amazing news, this doesn't account for the quality of life (hospital stays, burdensome treatments, side effects from life long medications). In addition about 6-10% of the US population do not have access to modulators leaving a large health disparity between those with CF variants responsive to modulators and those with variants not responsive.
It's no secret I started working as an Administrative Manager for the Cystic Fibrosis Foundation in June, 2024. I used to be a School Counselor and my career change was in part because I believe in the organizations priorities and purpose-- to find a cure for Cystic Fibrosis. We are close, the closest we have ever been and we can't stop now.
This year I'll be running the Disneyland Halloween Half Marathon on September 7, 2025 to raise funds for the Cystic Fibrosis Foundation. I am so excited for this challenge! In 2020 when I was living in Hawai'i, I had started training for a half marathon when I became pregnant with Rowland. I opted to stop my training (first trimester nausea was rough) but five years later I'm ready to try again! Please consider donating as I train and prepare for my first half marathon in support of the Cystic Fibrosis Foundation!
The Cystic Fibrosis Foundation has proven to make an impact on the lives of those living with CF. The Cystic Fibrosis Foundation has been thoughtfully funding scientific research that ultimately results in new medications for those living with CF--most recently modulators, a therapy that treats the underlying cause of the disease and has drastically improved the life expectancy of those living with CF. CF used to be considered a childhood disease because many people living with CF died as children, but now thanks to the CFF's investment into medical advancements and scientific research, the median life expectancy for those born in 2021 (when Rowland was born) is 65.
While this is amazing news, this doesn't account for the quality of life (hospital stays, burdensome treatments, side effects from life long medications). In addition about 6-10% of the US population do not have access to modulators leaving a large health disparity between those with CF variants responsive to modulators and those with variants not responsive.
It's no secret I started working as an Administrative Manager for the Cystic Fibrosis Foundation in June, 2024. I used to be a School Counselor and my career change was in part because I believe in the organizations priorities and purpose-- to find a cure for Cystic Fibrosis. We are close, the closest we have ever been and we can't stop now.
This year I'll be running the Disneyland Halloween Half Marathon on September 7, 2025 to raise funds for the Cystic Fibrosis Foundation. I am so excited for this challenge! In 2020 when I was living in Hawai'i, I had started training for a half marathon when I became pregnant with Rowland. I opted to stop my training (first trimester nausea was rough) but five years later I'm ready to try again! Please consider donating as I train and prepare for my first half marathon in support of the Cystic Fibrosis Foundation!
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