Posts Tagged: Paul M. Fernhoff Memorial Lecture

Rare Krabbe disease focus of Emory conference

Heartbreak of Krabbe disease: A mother’s story “My son’s life had some kind of meaning.  But when I looked up, I just saw this black hole.” Anne Rugari She buried her year-old son that day, sat on her front porch that night and stared at the sky.  “Looking up at the stars, I thought, ‘I know that I am not the only person this has ever happened to. I know there must be other families out there.’ But the doctor had said.

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