On Sunday, November 2nd, a dedicated team of six runners will take on the iconic streets of New York City in the world-renowned NYC Marathon—all in support of Dravet Syndrome Foundation (DSF). Each mile they run represents the strength, hope, and determination of the Dravet community, and we’re proud to have them lacing up their shoes to raise awareness and critical funds for our mission.
Meet our inspiring runners and the loved ones who motivate every step they take!
Meet Mike, who is running in honor of his daughter, Mila. When Mila was diagnosed with Dravet syndrome, Mike’s world changed forever. He never imagined hearing that word, just like he never imagined he’d one day take on the New York City Marathon. But now, he’s running for Mila – and for every family affected by this disease.
In Mike’s words: “I run the way research works: slowly, steadily, sometimes painfully—but with progress that builds, day by day. That’s what DSF does too. Every grant, every clinical trial, every act of support moves the field forward. Please consider donating. This is one marathon we will not lose.”
Join Mike’s fight for hope and progress here.
Meet Beatriz Rodriguez, who’s running in honor of her brother, Otto.
Growing up alongside Otto, Beatriz has seen the realities of Dravet syndrome up close – countless hospital visits, life-threatening seizures, and daily uncertainty. But she’s also witnessed his incredible resilience.
“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,” she shares.
By running for DSF, Beatriz is transforming pain into purpose—raising awareness, advocating for research, and honoring every individual impacted by Dravet syndrome.
Support Beatriz and help fund critical research.
Meet Stewart, who is running in honor of his son, Owen.
Owen had his first seizure at just 3 months old. Since then, he has endured thousands of seizures, countless therapies, and daily challenges—but he continues to fight with grit, tenacity, and a smile that inspires everyone around him.
Stewart is running to honor that strength – and to help fuel research, resources, and support for every Dravet family.
In Stewart’s words: “Running is one way I can give back to this amazing community.”
Support Stewart and help fund critical research.
Meet Amanda, who is running in honor of her best friend’s daughter, Kye.
Amanda and Bethany grew up side by side, and today Amanda runs for Bethany’s family and their incredible warrior, Kye. Diagnosed with Dravet syndrome as an infant, Kye has been fighting seizures for 17 years—with courage, faith, and the love of her siblings, service dogs, and parents by her side.
In Amanda’s words: “Running the NYC Marathon, raising money for DSF and all Dravet kids is just one way I can be a warrior for them. Your donation puts me one step closer to meeting my goal and it will make a huge difference in those living with Dravet syndrome.”
Join Amanda’s fight for hope and progress here.
Meet James, who’s running in honor of a resilient young girl named Laney. James was introduced to Laney through his girlfriend’s family, and her strength left a lasting impact on him. “She is a resilient fighter… and is what drove me to learn more about Dravet syndrome.”
Laney’s story became deeply personal. “Laney actually coded in the hospital I work at and ended up on life support to eventually be transferred to a children’s hospital,” James says. “She has had numerous hospital visits and continues to get stronger and fight after every visit.”
Before meeting Laney, James had never heard of Dravet syndrome. Now, he’s lacing up to change that. “I am running the NYC marathon in hopes to spread awareness, give support, and raise funds to get more research on Dravet syndrome.”
Support James and help fund critical research.
