Chronicling a family’s struggle with gene that guarantees Alzheimer’s at a young age

DeMoe kids
The DeMoe siblings in the 1960s.

[Editor’s note: “The Inheritance” is a new book by writer Niki Kapsambelis about the DeMoe family from North Dakota, who carry a rare genetic mutation that guarantees they will get Alzheimer’s disease at a young age. This is an interview with Kapsambelis and will Dr. William Klunk, co-director of Pitt’s Alzheimer’s Research Center.]

KAPSAMBELIS: Yeah, I met them in April 2009. I actually was hired by Dr. Klunk’s group to write an article about them for a newsletter. They are a really remarkable bunch.

the inheritance hrKLUNK: You don’t call someone up and leave a voicemail saying you have a mutation that will guarantee you you’ll die from Alzheimer’s disease when you’re in your late 40s or 50s. You know, it’s a whole process, it’s not just telling them what the results of the tests were.

KAPSAMBELIS: I worked on this book for five years, and when I first started it you try to be detached, because as a journalist that’s what you’re trained to do. And it’s impossible to spend this much time with people like this who are going through this situation who were willing to tell you every detail about their lives and not be impacted by it. You cannot do it and keep them at arm’s length.

The GLP aggregated and excerpted this blog/article to reflect the diversity of news, opinion, and analysis. Read full, original post: Pittsburgh Author Pens Heart-Wrenching Tale Of Genetics, Family And Loss In ‘The Inheritance’

For more background on the Genetic Literacy Project, read GLP on Wikipedia

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