Rescue7.org

From the Abilities Expo in Chicago we're with Frank, a dad navigating a nanorare KIF1A diagnosis and a journey that rewrote his family’s map. What began with early toe-walking and questions about spasticity became a lesson in timing, persistence, and the power of genetic testing. A newly opened panel in Milwaukee delivered the clarity they needed, shifting the focus from guesswork to action.

Frank walks us through the care plan that followed:  The goal isn’t perfection—it’s participation. His son stays active, keeps up with other kids, and lives a childhood not defined by appointments. Along the way, we talk mindset, realistic optimism, and how to pace energy without dimming ambition. 

We also spotlight Rescue 7, a first-responder-led effort supporting families traveling to New York for rare-disease studies and clinical care. Lodging, transportation, local knowledge—these are the friction points that can stall access, and Rescue 7 clears the path so parents can focus on their child. Frank shares how community groups like KIF1A.org and the broader nano-rare network connect families with researchers, updates, and shoulders to lean on. The conversation closes with a shared military thread—infantry roots, training, and lessons in teamwork—that echoes through the way we approach adversity, logistics, and hope.

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