Dear Friends and Family,
Jack and I have decided to do something neither of us have done before – run a marathon. We’ve mustered up newfound energy and drive to run for our daughter, Blair, and the Cystic Fibrosis Foundation.
Our story began last year when we received the call that our brand-new baby had been diagnosed with cystic fibrosis (CF) in her third week of life. This chronic and degenerative disease brought feelings of fear and helplessness, but we quickly began to recognize the hope and promise that exists for people with CF today like never before.
Admittedly, before being confronted with it, I didn’t know what CF was. For those who are unaware, CF is an autosomal recessive disease, which means Blair received two faulty mutations from both me and Jack. (Neither of us knew we were carriers, which is actually quite common.) CF most critically affects the lungs, causing infections that age and damage them due to the thick, stagnant mucus hospitable to bad bacteria. But those faulty mutations exist in every cell, so CF manifests in different ways and places in the body. For babies, one of the most difficult expressions of the gene is in blocked pancreatic ducts, inhibiting digestive enzymes from reaching the intestines and causing malabsorption of fat and protein. This makes it very difficult to gain weight—a critical metric in the first year of life.
Although CF was new to us, a well established community has been fighting it since the 1950s. Leading the charge is an organization like no other: the Cystic Fibrosis Foundation. The CF Foundation began as a group of parents unsatisfied with the options available for their sick kids. This group has been relentless in their efforts to cure CF, a disorder that does not receive much attention from big pharma due to its small market size. Not only are they responsible for providing hundreds of millions in research, but they also have a direct hand in drug development—with a proven track record. Pulmozyme, Tobramycin, and most recently, a true miracle drug, Trikafta, are all glowing success stories that would not have been possible without parent fundraising and the CF Foundation. So here we are, joining the cause like many parents before us.
We are so happy to report that Blair is doing incredibly well—all praise be to God! After a pretty isolated first year, she is now making friends at “school,” traveling with us to see family, and living a normal toddler life. She has a spirit of energy and charm and a strength, both physically and willfully, that is unmatched. As exhausting as it is at times, we have a little fighter who completes all her breathing treatments (minimum one hour/day), sits through countless doctor’s visits, and does not even flinch anymore when getting blood drawn. Running a marathon pales in comparison to her pain and discipline.
Friends, we now ask for your generous support for this cause. There may not be a single better place to allocate your giving in terms of tangible results. Once a disease that claimed lives before children reached grade school, cystic fibrosis now has more adults than children living with it. Your dollars are a currency of years in life expectancy for those fighting CF—and that is not an overstatement. There have been undoubtedly great strides in the hike thus far, but even at the mountain’s peak, when the beautiful summit vista is revealed, there is still half the journey to go before we can rest.
With love and gratitude,
Jack and Ellie Sadler
Some helpful info:
Chevron Houston Marathon
Sunday January 19, 2025
Jack Strava
