Finding Purpose in the Paths We Never Planned
How do you find inspiration in the unexpected and derive excitement from the unknown? Earlier this month, the Folia team had the privilege of meeting with Sean and learning about his journey. Sean is navigating an IgA Nephropathy (IgAN) diagnosis, keeping up with college, diving into advocacy, creating the perfect sandwich, and using Folia to manage all the details in between.
When the game plan changed
Picture this: Sean entered college as a promising football player. A varsity captain in high school and an athlete his whole life, sports had always been a constant. That was until the spring of his freshman year, when he was diagnosed with IgAN, a rare and chronic kidney disease. Suddenly, the next three years of his college experience looked very different.
This transition came with dietary changes, academic accommodations, and the added responsibility of managing a chronic condition alongside his education. Worst of all for Sean—and following the recommendations of multiple physicians—he had to give up playing football after his first collegiate season. Football had been the foundation of his college experience that first year, providing him with a built-in support system of 100 teammates who helped ease the transition to college and being away from home.
But if you’ve ever met a college student-athlete, you know they’re not the type to sit still for long. Despite the trials and tribulations of giving up football, Sean quickly shifted his energies into other arenas. Soon after his diagnosis, he became involved with NephCure as a patient advocate, and began flying around the country to amplify and empower the voices of rare kidney disease patients. What began as an unexpected detour ultimately became the foundation of a new sense of purpose. His favorite part is speaking with kids who have rare kidney diseases, giving them space to open up about their experiences, sometimes for the first time, and helping them connect with others who are living a similar journey.
“I take the skills from being a football captain and player, and I apply it to my new team of doctors, politicians, and other advocates.”
A calling that came naturally
Sean’s drive to be an advocate did not begin with his IgAN diagnosis; it’s a part of who he has always been. He recounted years of involvement with the Best Buddies non-profit, starting in elementary school continuing through high school. Luckily for us, it was through his involvement with NephCure that he discovered Folia. Today, Folia helps Sean track the symptoms that matter most, giving him the ability to stay engaged in his health while remaining focused on the work he loves.
“[Folia] was another opportunity to be a part of something that can become something much bigger.”
That’s just the way Sean is – he never says no to a new opportunity and is always looking towards the future. In fact, he hopes to make a career out of advocacy, using his own experience to make a meaningful difference for others navigating rare kidney diseases.
Embracing the unknown
Living with a chronic condition means you never quite know what tomorrow will bring. Sean shares in the discomfort of that uncertainty. Yet ever the optimist, he also finds excitement in it—in the room to grow his work, in new avenues for patient empowerment, and in emerging ways to support others on similar journeys.
In the meantime, you can find Sean taking advantage of every moment; skiing on winter weekends, staying involved with football through coaching, and nurturing his passion for cooking and baking.
Sean said something that really stuck with us – you learn something new every time you talk to someone and allow them to share their story. Speaking with him truly brought that sentiment to life. He reminds us that even when life takes an unexpected turn, purpose can be found in the paths we never planned to walk. His story is a testament to resilience, curiosity, and the power of channeling the unknown into something meaningful. We can’t wait to see where Sean’s path takes him.
