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Amanda's Story

Follow the journey of Amanda and her husband, Bradley, as they fight to have children free of the gene that causes Gerstmann-Straussler-Scheinker disease, a prion disease that has “stalked her family for generations.”

Quotes from Amanda's July 2016 presentation at the CJD Foundation Family Conference:

  • "At the age of 26, I was handed a death sentence. I was instantly faced with making decisions about my life I never imagined I would have to make, let alone at such a young age."
  • "Doing (In-Vitro Fertilization with Pre-Implantation Genetic Diagnosis) gave me a purpose. It gave me back some of that sense of power that I lost because I was actually doing something to beat GSS at its own game."
  • "I find comfort in the fact that, as far as my family is concerned, this monster of a disease ends with me."

On The Bookshelf

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Radio Interviews with Author Gina Kolata

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This website was made possible by a generous donation from Cookie Stivison, in memory of her husband Tom Stivison, and a grant from the Centers for Disease Control and Prevention.