It’s hard to believe, but I’m really writing these words: I’ll be running the 2026 TCS New York City Marathon this November! And I need your help to make a difference.
For me, this race is more than a dream or a bucket list item. It is an important part of my family’s journey. That’s why I decided to run in partnership with the National Organization for Rare Disorders (NORD) to raise funds and awareness for people living with rare diseases. After all, if your dream only includes you, it is too small.
For our family, rare disease is not just a medical term. It has shaped our lives for more than a decade and will remain part of our story forever. For 12 years we searched for answers, learning to adapt and advocate for my middle daughter, Lira. In December 2025, we finally received a diagnosis and joined the rare disease community.
The funds raised through this marathon will support NORD’s mission to drive public policy, accelerate research, and improve care for people living with rare diseases and their families. Words are not enough to describe how important this support is.
I am definitely not a professional runner. This will be my first marathon, and I cannot promise I will finish it like Harry Styles in under three hours (let’s be honest, my goal is simply to survive). That probably makes the whole adventure even more intriguing, right?
Every contribution, no matter the size, helps support families living with rare diseases and adds a little extra hope to my optimistic plan of actually finishing the race.
Thank you for being part of this journey!
