I am excited to share that I will be running the 2026 New York City Marathon in partnership with the Cystic Fibrosis Foundation!
For me, this isn’t just about running 26.2 miles (which, to be clear, feels like a questionable choice given my historically subpar lungs). This cause is personal.
I was diagnosed with cystic fibrosis in February 1999, when I was 11 days old. I have two copies of the Delta F508 mutation, the most common form of the disease. When I was born, doctors told my parents I likely wouldn’t live to see my mid-20s. Today, I’m 27, living and working in New York City, and the life expectancy for someone with CF is pushing 70 - crazy what 27 years of research can do.
Growing up with CF looked like a lot of things: weeks long hospital stays, hours of breathing treatments, surgeries, pills, and coughing fits that could clear a room. That was just normal life for me, but most people had no idea I was sick unless I disappeared into the hospital or started coughing mid-conversation. CF is a weird, invisible kind of illness like that.
Through all of it, the Cystic Fibrosis Foundation has been a constant in my life. I’ve been fundraising and volunteering with them since I was a kid and this marathon feels like a full-circle moment from all the Great Strides walks I’ve been doing since I was in a stroller at the Phoenix Zoo in my Team Lilly shirt.
Everything changed for me in November 2019, when a genetic modulator called Trikafta was approved by the FDA. Within two weeks, my lung function jumped 20%. But more importantly, my day-to-day life changed in ways that are hard to overstate. I wasn’t waking up coughing every night or constantly wondering if the next infection would pull me out of my life for weeks at a time.
For the first time in 22 years, I got a glimpse of what it feels like to breathe normally, and let me tell you - it is wildly underrated.
All of this is only possible because of decades of research funded by the Cystic Fibrosis Foundation and supported by people who kept showing up, donating, and believing progress was possible.
While the progress has been incredible, there is still no cure. There are thousands of people with CF who can’t benefit from medications like Trikafta at all.
I wouldn’t be where I am or who I am today without the incredible work of the Foundation. Being physically able to train and hopefully complete the New York City Marathon is proof of the impact the Cystic Fibrosis Foundation research and funding has in the lives of those with CF.
So please join me in my goal of raising $10,000 for Cystic Fibrosis! Every contribution makes a difference. Until it's done!
- Lilly
