“While I breathe, I hope.”

On October 26th, I will be running in the 2025 Marine Corps Marathon. I will be running with the Breathe Team, in support of the great work by the Cystic Fibrosis Foundation (CFF). Our daughter, Ainsley, was diagnosed with CF at 16 months old. 

We discovered her failure to thrive (FTT) was due to pancreatic insufficiency caused by CF.  Ainsley takes pancreatic enzymes every time that she eats, to help her absorb the fats and nutrients that she needs to grow. Ainsley also uses a high frequency chest wall oscillation device (smartvest), for air way clearance, while completing her "breathing" treatments. She now takes over 18 pills a day at the age of 4. There is no cure for CF, but there are goals for treatment to ease symptoms, prevent and treat complications and slow the progress of the disease. 

Ainsley has two rare mutations. Neither are currently eligible for a modulator, making her part of the 10%. Different mutations cause different defects in the protein, these medications that have been developed so far, are effective for only in people with those specific mutations. We hope one day, all CF warriors will be eligible for a modulator. This is why it is so important to help fund research for CF. 
 

There continues to be tremendous advancements in CF care, which have greatly improved the quality of the lives of people with CF. In the 1950s, a child with CF rarely lived long enough to attend elementary school. Today, many people with CF are achieving their dreams of attending college, pursuing careers, getting married, and having kids. Although there has been significant progress in treating this disease, there is still no cure and too many lives are cut far too short.

CFF is focused and committed on developing life-saving therapies for those with CF, including those like our Ainsley who have rare and nonsense mutations; in hope to one day develop a lifelong cure.  This CF community has been so warm and welcoming despite the reason we are all a part of it. Consider donating today in support of the Cystic Fibrosis Foundation,  in support of all those living with CF whose lives will hopefully continue to transform.