Manufacturing My Miracle: One Woman’s Quest to Create her Personalized Gene Therapy
Autor Jill Dopf Vilesen Limba Engleză Hardback – 18 sep 2025
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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Specificații
ISBN-13: 9781538197226
ISBN-10: 1538197227
Pagini: 224
Dimensiuni: 146 x 218 x 20 mm
Greutate: 0.42 kg
Editura: Bloomsbury Publishing
Colecția Bloomsbury Academic
Locul publicării:New York, United States
ISBN-10: 1538197227
Pagini: 224
Dimensiuni: 146 x 218 x 20 mm
Greutate: 0.42 kg
Editura: Bloomsbury Publishing
Colecția Bloomsbury Academic
Locul publicării:New York, United States
Cuprins
Introduction: Olympic-sized Dreams
Chapter One: Appalachian Medicine
Chapter Two: Witches' Fingers Grab my Legs
Chapter Three: Captured
Chapter Four: Loss of Control
Chapter Five: Killer Instinct
Chapter Six: Un-Walking
Chapter Seven: Contains Photo: Do Not Bend
Chapter Eight: Deliberations
Chapter Nine: Responsible Biohacker
Chapter Ten: Going to Pakistan
Chapter Eleven: Breaching the Ivory Tower of Medicine
Chapter Twelve: From Death to Life
Notes
Bibliography
Index
About the Author
Chapter One: Appalachian Medicine
Chapter Two: Witches' Fingers Grab my Legs
Chapter Three: Captured
Chapter Four: Loss of Control
Chapter Five: Killer Instinct
Chapter Six: Un-Walking
Chapter Seven: Contains Photo: Do Not Bend
Chapter Eight: Deliberations
Chapter Nine: Responsible Biohacker
Chapter Ten: Going to Pakistan
Chapter Eleven: Breaching the Ivory Tower of Medicine
Chapter Twelve: From Death to Life
Notes
Bibliography
Index
About the Author
Recenzii
The breadth of life contained in Jill's new book is incredible. . . . Powerful [and] candid.
Jill is like flowing water. In her pursuit for answers, she is an unassuming force that carves her own path through the unknown, overcoming obstacles with sheer perseverance. Jill has changed the landscape of her disease and provided hope for the future. Her story and her spirit are truly inspiring.
Both heartbreaking and exhilarating, Jill masterfully describes the quest for truth about her rare condition, while capturing some of the hows and whys of research behind rare genetic disorders. This memoir is a testament to her methodical and inquisitive mind, as well as her resilience-Jill Viles is a scientist, period.
This riveting and eye-opening memoir transports readers into a world shaped by persistence, love, friendship, kindness, and hope. Through the author's extraordinary perspective, we gain a deeper understanding of resilience and the power of human connection-lessons that resonate far beyond the realm of genetic disease. Without a formal degree in genetics, she has been a guiding force, encouraging others to pursue genetic testing to identify and treat Emery-Dreifuss muscular dystrophy and lipodystrophy. Along the way, she introduces us to the profound promise of the genetic revolution.
Jill is like flowing water. In her pursuit for answers, she is an unassuming force that carves her own path through the unknown, overcoming obstacles with sheer perseverance. Jill has changed the landscape of her disease and provided hope for the future. Her story and her spirit are truly inspiring.
Both heartbreaking and exhilarating, Jill masterfully describes the quest for truth about her rare condition, while capturing some of the hows and whys of research behind rare genetic disorders. This memoir is a testament to her methodical and inquisitive mind, as well as her resilience-Jill Viles is a scientist, period.
This riveting and eye-opening memoir transports readers into a world shaped by persistence, love, friendship, kindness, and hope. Through the author's extraordinary perspective, we gain a deeper understanding of resilience and the power of human connection-lessons that resonate far beyond the realm of genetic disease. Without a formal degree in genetics, she has been a guiding force, encouraging others to pursue genetic testing to identify and treat Emery-Dreifuss muscular dystrophy and lipodystrophy. Along the way, she introduces us to the profound promise of the genetic revolution.