Welcome to my Page
For Ada and Jones
The TLDR: When one of my best friends had a child with CF, I donated and felt for them. When a second close family had a child with CF a year later, I felt like I needed to do something else. Below are the stories of Ada and Jones. Please help support my ride so that families like this can continue to see leaps and bounds in providing life enhancing research and treatments.
Ada (from her parents Sean and Becca)
We received Ada’s diagnosis when she was 11 days old via a phone call from her pediatrician after her newborn screening results came in. When Sean and I started down the Google rabbit hole to learn what cystic fibrosis was, we were devastated. I couldn’t utter the words “life expectancy” in reference to our newborn. It wasn’t until we got to the clinic to meet with her CF team that we began to learn of the truly incredible advancements being made with CF treatment, largely propelled forward and funded by the CF Foundation.
It was the Foundation’s efforts that gave us hope for Ada’s life in those initial months and that continue to give us hope that there will be a cure. We learned of the walks, hikes, and bike rides that the CF Foundation puts on for fundraising and began to get involved ourselves.
Now when I think of fundraisers like this ride, I don’t see miles on a bike. I see the difference between a parent 30 years ago being told “your child may make it to college” and the doctor telling us “We believe Ada will live a long, full life.”
At a minimum, each day, Ada takes 14 pills, her life-changing genetic modulator (taken in powder form and mixed into food) twice a day, does 3 nebulizer treatments, takes multiple puffs on her inhaler, and completes two vest treatments. We are so grateful these treatments exist and yet, we want more. We want every person living with CF, regardless of their mutation, to qualify for a life-changing genetic modulator. We want every person living with CF, regardless of their place in the world or their finances, to have access to quality care. We want Ada to have the hours she spends on her treatments back to spend being a kid. Ultimately, what we truly want is a cure. And the thing is we can get there. It’s just miles away, but we don’t know how many. So we have to keep walking, hiking, biking until we get there.
Jones (from his parents Stephen and Mackenzie)
Jones, now 1.5, was diagnosed with cystic fibrosis when he was a few weeks old. He has two of the most common genetic mutations, which makes his condition very treatable, thanks in huge part of the efforts of the Cystic Fibrosis Foundation. He started medication at four months old, which drastically corrects the effects of CF, but it doesn’t cure the disease.
Despite amazing medical breakthroughs, Jones still a long road ahead managing his CF. He takes pills before every snack and meal to help digest his food and does percussive therapy twice a day to help break up the mucus in his lungs. While his prognosis is so much better than it would have been had he been diagnosed even a few years ago, CF is a disease that continues to need funding, support and awareness until CF stands for cure found. Thank you for helping Jones in his journey!
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. They are moms, dads, sisters, brothers, daughters, sons, and friends who face the sobering prospect of a shortened lifespan. I cycle for them.
Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
You can support me!
By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.