The family of longtime alum of the annual Iowa Summer Writers' Festival, Jill Viles, will read from her new memoir, Manufacturing My Miracle: One Woman's Quest to to Create Her Personalized Gene Therapy. Having her story published was one of Jill's proudest achievements, and she had looked forward to giving book readings in July 2025. Sadly, she passed away on June 12th, 2025. Her family members will read from the book in her memory.
Manufacturing My Miracle tells the remarkable story of how Viles self-diagnosed herself and her father with Emery-Dreifuss muscular dystrophy (EDMD). When expert US physicians did not agree with her diagnosis, she collaborated with geneticists in Italy and elsewhere in Europe to determine the genetic basis of EDMD and confirm her own diagnosis. Manufacturing My Miracle is described by Bloomsbury Academic Press as "One woman's quest to save her family from a rare hereditary disorder and what it means for our collective genetic future. (From discover to learning how to craft her own affordable gene therapy treatment, which she keeps in her freezer "in her rural Iowa kitchen, beside her ground beef and frozen waffles." Ranked as a bestselling book in Genetic Health, Manufacturing My Miracle "explores urgent questions such as: Who deserves access to life-giving treatments? What role should profit play in healthcare? Who is ultimately responsible for payment-private health insurers, the government, or the patient?" (bloomsbury.com).
Jill spent much of her time connecting people with EDMD and other rare diseases, researching, and writing. In this book, Jill shares captivating chapters about her search for answers and meaning in the world of genetic research with compelling and heartfelt stories.
Jill Viles was a writer, speaker, DIYscientist, writer, and teacher. Her writing has appeared in Johns Hopkins Magazine, and her scientific work has been published in Gene and Cells. A version of her story appears in This American Life (episode #577), and she was also interviewed by ProPublica and The Atlantic. Jill lived in Gowrie, Iowa with her husband, Jeremy, and their golden retriever.
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