this post was submitted on 19 Jul 2025
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Jill Dopf Viles — self-taught genetic detective, the central figure in the most interesting story I’ve ever reported and my friend — passed away last month in Gowrie, Iowa, at 50.

I’m heartbroken that Jill did not live to see the publication of her book — “Manufacturing My Miracle: One Woman’s Quest to Create Her Personalized Gene Therapy — which came out last week. I know how much she treasured the fact that she would soon be able to call herself “author.”

Here is a paragraph from her book:

“Every gain I’d made in learning more about my genetic disease had involved some type of deception — to do my family’s underground blood draw in 1996 required that phlebotomy supplies be lifted from a hospital and a nurse secretly visit our home; gaining journalist David Epstein’s interest began with a wild exaggeration in my email subject line: ‘Woman with muscular dystrophy, Olympic Medalist—same mutation’; and I’d adopted the lexicon of a research scientist to gain a client rate for Priscilla’s genetic testing (the cost for clients was half what was charged to individual patients).”

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