A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen
ONCE UPON A GENE - EPISODE 116
A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen
Luke Rosen is a dadvocate who founded the KIF1A organization to seek a cure for his daughter Susannah who was diagnosed with KIF1A. Luke shares personal details about his recent medical difficulties and opens the raw dialogue around what happens when a caregiver dies.
EPISODE HIGHLIGHTS
Can you tell us about your daughter and the KIF1A diagnosis?
Susannah was diagnosed at two years old with KIF1A and at the time we could only find about 15 people in the world and in literature…
The skinny
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