Articles liés à Manufacturing My Miracle: One Woman’s Quest...

Manufacturing My Miracle: One Woman’s Quest to Create her Personalized Gene Therapy - Couverture rigide

Viles, Jill Dopf

 
9781538197226: Manufacturing My Miracle: One Woman’s Quest to Create her Personalized Gene Therapy

Synopsis

Who lives? Who dies? Who decides? One woman's quest to save her family from a rare hereditary disorder and what it means for our collective genetic future

In Manufacturing My Miracle, Jill Dopf Viles becomes her own researcher to solve the genetic mystery that has plagued generations of her family. She discovers a link to Olympic hurdler Priscilla Lopes Schliep and, as gene therapy costs $4.25 million per treatment, she miraculously develops her own for a mere $1,500. With her personalized cure stored in her freezer, the most critical decision becomes: should she risk her health to save her family or wait for an industry unlikely to prioritize ultra-rare diseases?

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À propos de l'auteur

Jill Dopf Viles (1974-2025) pursued her B.S at Drake and Iowa State University in the field of biology/genetics. Viles's researching scientific clinical literature resulted in self-diagnosing herself and her father with Emery-Dreifuss muscular dystrophy (EDMD). She later received a master's in creative writing from Iowa State University and was an annual attendee of the University of Iowa Summer Writing Festival. In the course of researching her book Manufacturing My Miracle on her family's rare muscle disorder, she collaborated with scientists at the University of Iowa performing gene therapy on mutant fruit flies. Her writing appeared in Johns Hopkins Magazine, and her scientific work was published in medical journals Gene, Cells, and Science Advances.

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