The Forever Fix: Gene Therapy and the Boy Who Saved it - Tapa dura

"The Forever Fix" is a wonderful story told by one of our most gifted science and medical writers. In the tradition of Siddhartha Mukherjee's "The Emperor of All Maladies," Ricki Lewis explains complex biological processes in extremely understandable ways, ultimately providing crucial insights into the modeling of disease and illustrating how gene therapy can treat and even potentially cure the most challenging of our health conditions.--Dennis A. Steindler, Ph.D., former Executive Director of the McKnight Brain Institute, University of Florida In this impressive, meticulously researched study of the exciting new developments in gene therapy, geneticist and journalist Lewis (Human Genetics) looks closely at the history of setbacks plaguing the treatment of rare genetic diseases as well as recent breakthroughs...Yet with each success, as Lewis recounts in this rigorous, energetic work, possibilities in treating HIV infection and dozens of other diseases might be around the next corner. "Publisher's Weekly (starred review)" A fascinating account of groundbreaking science and the people who make it possible. "Kirkus" Ricki Lewis gives us the inspiring story of gene therapy as told through Corey's eyes--literally. Her book delves into the challenges modern medicine faces--both in its bitter disappointments and great successes--but it goes much deeper than that. With empathy and grace, Lewis shows us the unimaginable strength of parents with sick children and the untiring devotion of the physicians who work to find the forever fix' to save them. But best of all Lewis gives us a story of profound hope. "Molly Caldwell Crosby, author of The American Plague: The Untold Story of Yellow Fever, the Epidemic that Shaped Our History and Asleep: The Forgotten Epidemic that Remains One of Medicine's Greatest Mysteries" "The Forever Fix" is a wonderful story told by one of our most gifted science and medical writers. In the tradition of Siddhartha Mukherjee's "The Emperor of All Maladies," Ricki Lewis explains complex biological processes in extremely understandable ways, ultimately providing crucial insights into the modeling of disease and illustrating how gene therapy can treat and even potentially cure the most challenging of our health conditions. Dennis A. Steindler, Ph.D., former Executive Director of the McKnight Brain Institute, University of Florida Ricki Lewis has written a remarkable book that vividly captures the breathtaking highs and devastating lows of gene therapy over the past decade while giving ample voice to all sides -- the brave patient volunteers, their parents and physicians. "The Forever Fix" is required reading as we dare to dream of curing a host of genetic diseases. "Kevin Davies, Founding editor of Nature Genetics; author of The $1,000 Genome and Cracking the Genome" In 'The Forever Fix, ' Ms. Lewis chronicles gene therapy's climb toward the Peak of Inflated Expectations over the course of the 1990s. A geneticist and the author of a widely used textbook, she demonstrates a mastery of the history. "The Wall Street Journal" An engaging and accessible look at gene therapy. "Times Union" Medical writer Ricki Lewis interweaves science, the history of medical trial and error, and human stories from the death in 1999 of teenager Jesse Gelsinger, from a reaction to gene therapy intended to combat his liver disease, to radical successes in some children with adenosine deaminase deficiency. "Nature" Lewis adeptly traverses the highs and lows of gene therapy and explores its past, present, and future through the tales of those who've tested its validity. "The Scientist"" "In this impressive, meticulously researched study of the exciting new developments in gene therapy, geneticist and journalist Lewis (Human Genetics) looks closely at the history of setbacks plaguing the treatment of rare genetic diseases as well as recent breakthroughs...Yet with each success, as Lewis recounts in this rigorous, energetic work, possibilities in treating HIV infection and dozens of other diseases might be around the next corner."--"Publisher's Weekly" (starred review) "A fascinating account of groundbreaking science and the people who make it possible." --"Kirkus""Ricki Lewis gives us the inspiring story of gene therapy as told through Corey's eyes--literally. Her book delves into the challenges modern medicine faces--both in its bitter disappointments and great successes--but it goes much deeper than that. With empathy and grace, Lewis shows us the unimaginable strength of parents with sick children and the untiring devotion of the physicians who work to find 'the forever fix' to save them. But best of all Lewis gives us a story of profound hope." --Molly Caldwell Crosby, author of "The American Plague: The Untold Story of Yellow Fever, the Epidemic that Shaped Our History" and "Asleep: The Forgotten Epidemic that Remains One of Medicine's Greatest Mysteries" ""The Forever Fix" is a wonderful story told by one of our most gifted science and medical writers. In the tradition of Siddhartha Mukherjee's "The Emperor of All Maladies," Ricki Lewis explains complex biological processes in extremely understandable ways, ultimately providing crucial insights into the modeling of disease and illustrating how gene therapy can treat and even potentially cure the most challenging of our health conditions." - Dennis A. Steindler, Ph.D., former Executive Director of the McKnight Brain Institute, University of Florida "Ricki Lewis has written a remarkable book that vividly captures the breathtaking highs and devastating lows of gene therapy over the past decade while giving ample voice to all sides -- the brave patient volunteers, their parents and physicians. "The Forever Fix" is required reading as we dare to dream of curing a host of genetic diseases." --Kevin Davies, Founding editor of "Nature Genetics"; author of "The $1,000 Genome" and "Cracking the Genome""In 'The Forever Fix, ' Ms. Lewis chronicles gene therapy's climb toward the Peak of Inflated Expectations over the course of the 1990s. A geneticist and the author of a widely used textbook, she demonstrates a mastery of the history." "-- The Wall Street Journal" "An engaging and accessible look at gene therapy." --"Times Union ""Medical writer Ricki Lewis interweaves science, the history of medical trial and error, and human stories ... from the death in 1999 of teenager Jesse Gelsinger, from a reaction to gene therapy intended to combat his liver disease, to radical successes in some children with adenosine deaminase deficiency." --"Nature ""Lewis adeptly traverses the highs and lows of gene therapy and explores its past, present, and future through the tales of those who've tested its validity." -"The Scientist" "Ricki Lewis gives us the inspiring story of gene therapy as told through Corey's eyes--literally. Her book delves into the challenges modern medicine faces--both in its bitter disappointments and great successes--but it goes much deeper than that. With empathy and grace, Lewis shows us the unimaginable strength of parents with sick children and the untiring devotion of the physicians who work to find 'the forever fix' to save them. But best of all Lewis gives us a story of profound hope." --Molly Caldwell Crosby, author of "The American Plague: The Untold Story of Yellow Fever, the Epidemic that Shaped Our History" and "Asleep: The Forgotten Epidemic that Remains One of Medicine's Greatest Mysteries"

Eight-year-old Corey Haas was nearly blind from a hereditary disorder when his sight was restored through a delicate procedure that made medical history. Like something from a science fiction novel, doctors carefully injected viruses bearing healing genes into the DNA of Corey's eyes - a few days later, Corey could see, his sight restored by gene therapy. "The Forever Fix" is the first book to tell the fascinating story of gene therapy: how it works, the science behind it, how patients (mostly children) have been helped and harmed, and how scientists learned from each trial to get one step closer to its immense promise, the promise of a "forever fix", a cure that, by fixing problems at their genetic root, eliminates the need for further surgery or medication. Told through the voices of the children and families who have been the inspiration, experimental subjects, and successes of genetic science, "The Forever Fix" is compelling and engaging narrative science that explores the future of medicine as well as the families and scientists who are breaking new ground every day.