Some rooms change how you think about the work you do. For Krissy Hicks and Becky Mason, who are leaders in Bottle Rocket’s Healthcare vertical, the Cystic Fibrosis Foundation’s Executive Breakfast was one of those rooms.
The speakers were people living with cystic fibrosis (CF), and the parents, partners, and loved ones who live alongside them. They told honest, vulnerable stories about what it takes to get through a single day with CF. They also shared what drives a community that has spent decades working to make CF stand for something new: Cure Found.
Life with CF, one breath at a time
Close to 40,000 children and adults in the United States, and about 105,000 people worldwide, are living with cystic fibrosis. CF is a genetic disease that mainly affects the lungs and digestive system. It makes the body produce thick, sticky mucus. That mucus makes it hard to breathe, leads to frequent lung infections, and interferes with digestion. CF is lifelong, and there is no cure yet.
Managing it is close to a full-time job. A typical day can include:
- Several medications, often including enzymes taken with every meal
- Inhaled treatments to open the airways and thin the mucus
- Airway clearance, often with a vest that vibrates the chest to loosen mucus from the lungs
- Regular clinic visits, lung function tests and, at times, hospital stays
These treatments can take up to two hours a day. Over a year, that’s more than 700 hours, the equivalent of 18 full 40-hour workweeks spent on care. Behind every person with CF is a routine that rarely gets a day off, and usually a family that carries it with them.
A century of progress
In less than a century, CF has gone from a disease of early childhood to one where most people born today are predicted to live into their mid-60s. In the 1920s, few children with CF survived past infancy. Today, the CF Foundation predicts that half of people born with CF between 2021 and 2025 will live to 65 or older.
Much of that progress traces back to a bold bet. The CF Foundation pioneered venture philanthropy: instead of waiting for the big pharma industry to take on a rare disease, it invested donor dollars directly in drug development with biotech and pharmaceutical partners. That model helped bring CFTR modulators to patients. These are drugs that help repair the faulty protein at the root of CF, so the body can keep mucus thinner and easier to clear. They treat the underlying cause of CF, not just its symptoms, and the triple-combination therapy approved in 2019 changed daily life for most people with the disease.
There is still more work to do. About 10% of people with CF have genetic mutations that today’s modulators can’t treat, and for them, the need for a cure is especially urgent.
But the mindset has shifted. A speaker at the event, who lives with CF, put it: “People born with CF today are not thinking about living a partial life. They’re thinking about living a full life.”
“What’s your mutation?”
No two experiences with CF are exactly alike. Hundreds of different gene mutations can cause the disease, and each one shapes how CF shows up and which treatments can help. That’s why people in the CF community often ask each other, “What’s your mutation?” It’s a gentle way of asking how CF has touched your life, whether you live with it yourself or love someone who does. Beyond their professional passion for healthcare, Krissy and Becky each have their own connection.
Every Mutation Has a Connection. This Is Becky’s.
Twelve years ago, Becky’s nephew was diagnosed with cystic fibrosis when he was just a month old.
“It was scary, because none of us knew what this meant, and we weren’t given a lot of information,” she remembers. So she did what everyone tells you not to do: she Googled it. When she read the life expectancy figures, she was terrified.
“It took some time to get everyone back on their feet,” Becky says. “But my sister and brother-in-law found the CF Foundation and started learning how to best care for their son.”
Today, the Foundation feels like family. Becky and her brother-in-law both serve on the board of the CF Foundation’s Northeast Dallas chapter, where they help raise funds that power the Foundation’s research. Last year, her sister and brother-in-law also chaired a large fundraising event, with every dollar going toward research to help find a cure. They will do that again this year.
Those numbers that frightened Becky twelve years ago tell a very different story now. Thanks to the treatments the CF Foundation helped bring to life, her nephew is a thriving soccer player with a bright future ahead of him, and a family cheering him on every step of the way.
This Is Krissy’s.
Krissy grew up with a classmate who was diagnosed with cystic fibrosis.
“I remember an instance in elementary school in which one of my favorite playmates was out sick for a few weeks. As you would expect, we had loads of questions when she returned to school. She explained her diagnosis, the ways in which she had to safeguard her health because of how prone to infections she was because of it. A sobering awareness at a very young age.”
Making CF stand for Cure Found
For families living with CF, the goal is deeply personal, and some days it can feel just out of reach. There is still no cure, but no one is facing that alone. The Foundation is moving toward a cure on three fronts:
- Improve life today. Better care, treatments, and support for everyone living with CF right now.
- Unlock the cure. Research aimed at fixing the root cause of CF for every person with the disease.
- Propel science beyond CF. CF isn’t the only community living with a genetic disease. The discoveries made here can open doors for many others.
Why this matters to us
At Bottle Rocket, our healthcare work starts with a simple belief: behind every patient record, care plan, and app or web screen is a person, and usually a family, trying to get through the day. Mornings like this one keep that front and center.
CF shows what happens when patients, families, clinicians, researchers, and partners pull in the same direction. It also shows how much of living with a chronic condition happens outside the clinic: in the treatment routine, the medication schedule, and the late-night questions. That’s where thoughtful digital experiences can make care a little easier to carry.
People living with CF might not stand out in a crowd. They look like your coworkers, your neighbors, and your friends. But the world they navigate takes courage every day, and so does the work of the people who love them.
On behalf of Krissy, Becky, and everyone at Bottle Rocket: we’re rooting for the cure, and we’ll keep showing up for people living with CF and for everyone working to make healthcare better.
To learn more or get involved, visit the Cystic Fibrosis Foundation.