Running for DSF is deeply personal to me because it represents so much more than just a race—it’s a way to support and advocate for those, like my brother, who face immense challenges yet continue to fight with incredible strength. Growing up with Otto, I have witnessed firsthand the challenges, uncertainties, and resilience that come with living with Dravet syndrome. From countless hospital visits to life-threatening seizures, our journey has been anything but easy. Yet, through it all, Otto’s strength has inspired me to push forward, and I want to channel that same determination into running the 2025 TCS NYC Marathon.
Dravet syndrome is a rare and severe form of epilepsy. It is defined by prolonged, frequent seizures that are often resistant to treatment, as well as developmental delays, motor and speech impairments, and a higher risk of sudden unexpected death in epilepsy (SUDEP). Families navigating Dravet syndrome face constant medical challenges, the uncertainty of seizure triggers, and the need for lifelong care.
Running has become my way of coping, of turning pain into purpose, and of using my own physical ability to uplift those who don’t have the same opportunity. By running for DSF, I hope to raise awareness for the struggles that families like mine face every day, to advocate for continued research and resources, and to honor not only Otto but every individual impacted by this condition. My dream is to cross that finish line knowing that every step was for a greater cause—that through my miles, more people will learn about Dravet syndrome, more support will be given to those in need, and that Otto’s incredible fight will be seen and recognized on a world stage.
