By the time I was sixteen, she had already faced four different diagnoses. As a kid, I didn’t fully understand the weight of it. When something happens enough times, it starts to feel strangely normal. I convinced myself that things would always work out. Looking back, I realize how much strength that actually required from her. Doctor appointments, surgeries, recoveries, uncertainty. She carried all of it while still being the person who held our family together. 

Today she is cancer free, and to me she represents the definition of resilience. For a long time, rare disease felt like something that happened quietly in the background of our lives. Something our family dealt with privately. But the older I’ve gotten, the more I’ve realized how many families live with similar stories, often without the resources, community, or visibility they deserve. That realization is what brought me to Running for Rare. 

I first joined the team in 2024 because I wanted to run the New York City Marathon for something deeply personal. What I found was much bigger than that. I found a community of runners, patients, families, and advocates who believe that rare diseases deserve more attention, more research, and more support. Each year since, the experience has meant more. The relationships with community partners, the team culture that’s forming, the sense that we’re building something that will last beyond a single race weekend. Running a marathon through New York City is already powerful. Doing it while representing the stories of families who are fighting battles most people never see gives every mile a different kind of meaning. I run for my mom. I run for families navigating rare disease right now. And I run because I believe that awareness, funding, and community can change what the future looks like for them.