On a crisp March morning in New York City, something powerful unfolded, not just on the racecourse, but within a community united by purpose.
The EveryLife Foundation for Rare Diseases proudly brought together its inaugural team at the United Airlines NYC Half Marathon, marking a milestone moment in our journey to elevate awareness, accelerate advocacy, and support the more than 30 million Americans living with rare diseases.
This was more than a race. It was a movement in motion.
Miles Fueled by Purpose
Six dedicated runners took to the streets of New York City, each carrying with them a deeply personal “why.” Whether running in honor of a loved one, in memory, or in support of the broader rare disease community, every step represented something far greater than the miles ahead.
From the energy of the start line in Brooklyn to the iconic finish in Central Park, our runners moved through the city with determination, resilience, and heart. Along the way, they were met with cheers, encouragement, and a shared understanding: this effort mattered.
Because behind every mile was a story. Behind every step, a community.
Voices from the Course
The heart of this race lives in the voices of those who ran it.
“Running this race and the streets of NYC to help bring awareness to those living with a rare disease and the mission of the EveryLife Foundation was an experience I can hardly put into words and the highlight of 2026! Knowing the physical and mental strength patients and caregivers exhibit in their everyday life was motivation to keep going when each hill hit and my legs fatigued. I ran for those who cannot, for those who dream of being able to run and cheer on their family one day, for those that face greater obstacles than I can imagine – the rare disease community is a special one and the motivation to keep running. Bringing awareness through fundraising and representation of EveryLife logo while running, is the least we can do to assist the ongoing mission and advocacy for rare disease!”
— Katie Kundrat
“Running the United Airlines NYC Half on behalf of the EveryLife Foundation hit me in a way I didn’t expect. There were moments during the race where I was struggling. And then it hit me, pretty profoundly and a little ironically. The things I was struggling with in that moment are things I usually take for granted. Things I can do. Things my body allows me to do. And for so many living with rare diseases, those same things aren’t a given, they can be a struggle. That’s why I run for rare.”
— Julie Evarts
“Running the Unites Airlines NYC Half in support of the EveryLife Foundation for Rare Diseases is deeply personal. Every mile represents the strength of patients and families who face rare diseases with resilience every day. This race is more than a finish line, it’s a powerful reminder that awareness drives action, research fuels hope, and together we can help bring life-changing treatments within reach”
— Donta Gonzalez
“Running the United Half Marathon was iconic. I was very grateful to run the race while also raising awareness and funds for the EveryLife Foundation. What a great reminder that together, anything is possible!”
— Heli Quijada Salazar
“People keep asking me what it was like to run the NYC 1/2…in short it was inexplicably easy – making the entire experience beautiful. I don’t know why that gift was mine to have but I kept thinking about the road that led me to that moment. I had a child who was diagnosed with a disease that could have taken his life but was saved by science – science that was allowed to be practiced due to US policy. Policy that the Everylife works tirelessly to ensure continues and helps new policies move forward. Rare disease is like a 1/2 marathon – one foot after the other – support stations along the way – the collective cheering squad trying to encourage those that are tiring as the miles go by. Rare disease is never easy so when life hands little glimmers where your cheeks hurt from smiling you hold them close. The NYC 1/2 is one that I’ll hold close – forever.”
— Katie Barrett-Stevens
Each runner reflects the strength, purpose, and personal connection that made this team so extraordinary.
More Than a Finish Line
Crossing the finish line was not the ending, it was a powerful symbol of what’s possible when a community comes together. Our runners didn’t just complete 13.1 miles; they raised critical funds, amplified awareness, and inspired action, supported every step of the way by a community that showed up, gave, and believed.
Help us build on this momentum. Make a gift today to support the EveryLife Foundation’s advocacy, education, and programs for the rare disease community.
Help us amplify the voices of the rare disease community to drive meaningful change and influence policy.
