2026 United Airlines NYC Half

Why I Run: Running has always been a way that I could connect my mind and body to be fully present in both. I started running when we lost my brother-in-law in a hiking accident – if he could no longer run, then I would. This activity has deep meaning as a mother who has worked to find the best treatments for her child and in turn became the first Executive Director of the leading patient advocacy organization for Telomere Biology Disorders. Running means I run for and beside those in the rare community. If they can’t run, then I will. To put it simply, I love it and it allows me to think about all that my life and career have asked of me and to show up in the best way possible for myself and those I love and serve.

Why I Run: Katie and Kathleen are running together as a fundraising team, combining their efforts to support the rare disease community and amplify their collective impact.

I run because every day I work with children and families navigating rare neuromuscular conditions, and I see how much strength and perseverance their journeys require. The families and patients endless dedication to their care and improving their quality of life, inspires me to move and run for this cause.  As a physical therapist on the neuromuscular clinical team at Children’s National, I support patients as they work toward mobility, strength, and maintaining quality of life  and those experiences stay with me long after the clinic day ends.

Running with the EveryLife Foundation feels like another way for me to stand alongside the patients and families I care for. This race is about showing up, raising awareness, and helping advance a future where individuals affected by rare disease have the support, research, and resources they deserve. I am proud to represent a foundation that embodies the same values my patients exhibit every day.

Why I Run: I’m running on behalf of the EveryLife Foundation because rare disease advocacy lives at the intersection of my personal life and my professional calling. As a Neonatal Nurse Practitioner, I’ve spent years caring for babies and families facing rare and complex diagnoses, and I’ve seen how critical awareness, research, and policy support truly are. That understanding became even more personal when my grandson was diagnosed with a rare condition. Running this race is my way of helping keep rare diseases visible, supporting families who often feel overlooked, and contributing to a future where research and advocacy continue to move forward.

Why I Run: As a proud parent of two daughters who spent time in the NICU, I know firsthand the importance of specialized care, early screening, and comprehensive support for families. This is just one of the reasons why I am running the United Airlines NYC Half as a part of Team EveryLife! The EveryLife Foundation transforms science into action— advancing research, policy, and access to care. Join me in turning every mile into measurable impact.

Why I Run: I wanted to run the NYC Half with the EveryLife Foundation because their mission aligns deeply with my commitment to advocacy, equity, and community-driven impact. Rare disease patients and families too often navigate fragmented systems without adequate support or representation, and the EveryLife Foundation works tirelessly to change that by amplifying patient voices and advancing meaningful policy solutions. Running this race is my way of honoring the resilience of the rare disease community and helping ensure that lived experience is at the center of research, policy, and care. Every mile represents progress toward a future where no rare disease patient is left behind.

Why I Run: Katie and Kathleen are running together as a fundraising team, combining their efforts to support the rare disease community and amplify their collective impact.

I run because every day I work alongside children and families navigating rare neuromuscular conditions, and I see how much strength it takes to live with uncertainty. As a Neuromuscular Clinic Coordinator at Children’s National, I’ve had the privilege of supporting families through some of their most challenging moments — and those experiences stay with me.

Running with the EveryLife Foundation feels like a natural extension of the advocacy I care so deeply about. This race is my way of showing up for the rare disease community, helping raise awareness, and supporting efforts that bring families closer to answers, resources, and hope. Every mile is for the patients and families who inspire me every single day.