#CNBC This 11-year-old has battled a rare disease for years — a breakthrough drug helped deliver relief

This 11-year-old has battled a rare disease for years — a breakthrough drug helped deliver relief
Luke Rosen was working as an actor and writer in New Yrok when his daughter Susannah was diagnosed with KIF1A, an ultra-rare neurodegenerative condition. It’s often fatal.

At the time they received Susannah’s diagnosis, Luke and his wife Sally didn’t have much hope. There was no treatment for KIF1A, and there wasn’t much work being done on it.

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