I started my stride against CF in 1996. My closest cousin, Danny, and I were the same age — we liked the same things, went to the same school, and experienced life side by side. But he was dealt a card I wasn’t — he was born with cystic fibrosis. Back then, the average life expectancy for someone with CF was only around 30 years old. Danny endured endless treatments, doctor’s visits, and hospital stays. He was a CF warrior (and still is!) and I watched from the sidelines, wondering why life was so unfair to him.

For two decades, my family participated in Great Strides. We did it the old-fashioned way — going door to door, handing out pamphlets, and speaking directly to the members of our community. At the age of 14, I sent letters to big corporations asking for donations to support our next event. At the age of 18, I organized and hosted a CF spaghetti dinner with live musical performances as my high school senior project. Every donation, every fundraiser, and every advocacy opportunity revolved around Great Strides.

Danny’s mom, my aunt, became a leader in the CF community. Just having a Great Strides team for Danny was not enough. My aunt understood that spreading awareness about CF would provide the best source of hope and open doors to amazing opportunities for her son.

She began organizing and hosting the annual Great Strides event in our area. She organized “money jar wars” at local high schools, lottery raffles to win cruises, and collection containers to be put out at local stores. As I grew older, I watched my aunt transform her passion for CF awareness into a movement, leading our town in fundraising efforts and advocacy. Her relentless drive inspired so many, including me. 

Fast forward to the year 2022. My life had moved on — I grew up, moved away, started a career, and lost sight of the mission I had once been so passionate about. Then, my own life was changed in an instant. I found myself, in a state of pure devastation, reading my own newborn baby’s CF diagnosis. When I read the diagnosis, it felt like the air had been knocked out of me — an overwhelming wave of fear, grief, and disbelief crashing all at once, shattering the sense of security I thought I had. How could this be happening? How could this rare disease strike twice in the same family? I had been naïve, and I was in denial.

My aunt told me that she was also devastated, as she truly understood how I felt. She told me she would be there with us every step of the way.

So now, I stride again with even more purpose.

All those years of fundraising — the door-to-door asks, the fliers, and phone calls — they paid off. Because of them, my son Maxson was born into a new era of CF. An era where life expectancy has doubled since the 1990s. This is an era where treatment options are better, breakthroughs continue to happen, and hope is stronger than ever.

Still, my son’s life is far from easy. He has a care team of several specialists and endures countless blood draws, throat swabs, and medications. He has nebulizer and chest physiotherapy sessions up to four times a day. Maxson is a CF warrior.

I stride for him.

Even though Maxson has a brighter future thanks to CF developments, I still stride for those in the CF community who are fighting for their lives. Because not every patient can benefit from the breakthrough medications we currently have. The fight is far from over.

We need research to continue so they, too, can have the chance to watch their babies grow.
That’s why I stride.

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