A Legacy of Courage: Honoring Sam Leary Through Advocacy

Author: NF Network

Published On: 2/25/26

From the very beginning of his life, Sam Leary faced extraordinary medical challenges. Diagnosed with segmental NF1 at the age of five, Sam endured significant complications, including a leg-length discrepancy, tumor growth, numerous hospitalizations, and multiple surgeries. Through it all, Sam and his mother, Karen, met each obstacle with unwavering courage and determination.

Together, they stood on the front lines of the NF Network Advocacy Program, giving voice to thousands of families and helping secure millions of dollars in federal research funding in the pursuit of treatments—and ultimately, a cure—for neurofibromatosis. Sam’s bright mind, generous heart, and beautiful spirit left a lasting imprint on everyone who knew him. Though he left us far too soon, his legacy continues to inspire and guide our community.

In his memory, the NF Network proudly carries forward the Sam Leary Advocacy Scholarship Fund. This scholarship provides travel support for NF Advocates traveling to Washington, D.C., ensuring that the vital advocacy work so meaningful to Sam and Karen continues.

We are honored to announce that this year’s Sam Leary Advocacy Scholarship has been awarded to NF Advocate Alex Baden. It is especially exciting to have three generations on the Hill—and to welcome our very first Advocate from Alaska. Alex’s passion and enthusiasm shine brightly as she advocates in honor of her mother and grandfather. Through her voice and dedication, Sam’s legacy of courage, compassion, and action lives on.

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