By: Stacy Allen
Most people think of hope as something passive, a feeling you hold onto while waiting for things to improve. But real hope, the kind that changes outcomes, looks very different. It’s active. It’s uncomfortable. And often, it shows up before there are any answers at all. That’s what I’ve come to understand as courageous hope.
A Life Shaped by the Rare
My husband, McKay, and I are raising two boys — Jaxson (14) and Evan (12). Our lives look a lot like any other family’s: football games, lacrosse sidelines, travel, and a lot of cheering for BYU. But underneath that normalcy is something most people never experience: life shaped by rare disease. Both of our boys have had medical journeys. But Evan’s story is the one that changed everything.
Before There Were Answers
In 1938, Dr. Dorothy Andersen identified cystic fibrosis (CF) as a distinct disease. She didn’t have treatments. She didn’t have a cure. What she had was clarity and the courage to act on it anyway. That same pattern is repeated, again and again. In the 1950s, parents of children with CF were told their kids wouldn’t live past early childhood. There was no roadmap. No research infrastructure. No support system. So, they built one. They organized. They fundraised. They pushed science forward. By 1955, those efforts became the Cystic Fibrosis Foundation, a turning point that would eventually reshape the trajectory of the disease. This wasn’t hope as optimism. This was hope as action.
Our Diagnosis
In 2013, our son Evan was diagnosed with cystic fibrosis at six weeks old. We walked into Primary Children’s Hospital, overwhelmed, trying to process a future we hadn’t planned for.
We learned:
- CF is progressive.
- Life expectancy was around 36 years.
- Daily care would be intense and lifelong.
It was heavy. It was heartbreaking. And then our doctor said something we’ve never forgotten: “For the first time in CF history, there is hope.” There were treatments in development. There were clinical trials underway. There was momentum. So we made a decision: We wouldn’t sit back and wait.
Choosing to Engage
Courageous hope, for us, meant stepping in — fully. We:
- Immersed ourselves in research.
- Built relationships with the CF community.
- Fundraised and advocated.
- Shared Evan’s story repeatedly.
- Showed up wherever progress was being made.
Eventually, Evan qualified for a clinical trial tied directly to decades of research funded by families before us. In 2017, at just two and a half years old, he began a three-year trial at Stanford. It was hard. More procedures than any toddler should endure. More disruption than any family hopes for. But we did it because contributing to something bigger than ourselves mattered.
When Hope Becomes Reality
In 2021, everything changed. A breakthrough drug, Trikafta, became available for Evan’s age group.
For the first time:
- Nearly 90% of CF patients had access to treatment targeting the root cause.
- Life expectancy projections jumped into the 60s and beyond.
The shift was dramatic.
Today, Evan:
- Plays football and lacrosse.
- Travels the world.
- Lives a life that once felt impossible.
CF is still part of our story. But it no longer defines every moment.
What Courageous Hope Really Means
If you asked me what I’ve learned through all of this, it comes down to something simple:
Say yes.
I’ve said yes to:
- Advocacy
- Research participation
- Leadership roles
- Policy conversations
- Writing and publishing in medical spaces
Not because I had a plan. But because each step revealed the next one. That’s how courageous hope works — it compounds.
The Next Fight
Breakthroughs don’t end the journey. They change it. With CF treatments costing over $300,000 per year, the next challenge became access and affordability.
So the “yes” continues:
- Yes, to policy work
- Yes, to insurance advocacy
- Yes, to system-level change
That path has led me to my current role at Primary Children’s Hospital, working to connect patients, families, and healthcare leaders to improve care. Because the story isn’t finished.
A Message Worth Carrying Forward
The story of cystic fibrosis isn’t one of waiting. It’s a story of:
- Parents who refused to accept limits
- Scientists who worked without guarantees
- Patients who endured before solutions existed
It’s a story of courageous hope.
And that kind of hope isn’t limited to medicine. It shows up in everyday decisions:
- Speaking up
- Getting involved
- Refusing “good enough”
- Taking action before certainty
The breakthroughs we celebrate today exist because someone, years ago, acted without knowing the outcome.
The Real Invitation
Whatever brought you into proximity with challenge, whether rare disease or something else entirely, the principle is the same:
- Your voice matters.
- Your action matters.
- Your willingness to step forward matters.
Because the next breakthrough, in any field, is already being built. By people who choose to act before the answers exist.