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The Forever Fix: Gene Therapy and the Boy Who Saved It 1st Edition

4.9 out of 5 stars 42 customer reviews
ISBN-13: 978-0312681906
ISBN-10: 0312681909
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Editorial Reviews


“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

About the Author

RICKI LEWIS is a Ph.D. geneticist, journalist, professor and genetic counselor. The author of one of the most widely used college textbooks in the field (Human Genetics: Concepts and Applications, now in its 10th edition), she has also written hundreds of popular pieces on science and other topics for trade and specialized magazines, including Nature, Discover, and The Scientist.


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Product Details

  • Hardcover: 336 pages
  • Publisher: St. Martin's Press; 1 edition (March 13, 2012)
  • Language: English
  • ISBN-10: 0312681909
  • ISBN-13: 978-0312681906
  • Product Dimensions: 6 x 1.4 x 8.4 inches
  • Shipping Weight: 14.4 ounces
  • Average Customer Review: 4.9 out of 5 stars  See all reviews (42 customer reviews)
  • Amazon Best Sellers Rank: #606,265 in Books (See Top 100 in Books)

Customer Reviews

Top Customer Reviews

Format: Hardcover
The Forever Fix is one of the most moving books I have had the pleasure to read. This might come as s surprise given the high technical nature of the subject matter. The story of gene therapy is not just a historical recitation of the efforts of dedicated scientists who have advanced research, embedded in this story are the individual stories of the families and their brave children who battle the effects of their disorders every day.

As Max's mom (featured in her book), I am grateful for the opportunity to share our story and bring to light both the daily challenges of raising a child with a rare genetic disorder as well as our journey in seeking a medical therapy to help my precious son.

Without these brave families and their children, none of the advances in gene therapy would be possible. I am forever grateful to Ricki Lewis for bringing attention to both the science and the lives these medical advancements have touched ~Ilyce Randell
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Format: Hardcover
Lewis does an excellent job of unraveling the history of gene therapy layer by layer. Where others center around the success of science, Lewis masterfully interweaves the bitter reality of failure and the footmarks of success and helps her reader understand how failure was necessary to improve the science to ensure modern day's use of gene therapy was more successful.

If gene therapy incites thoughts of fear and thus reservation about whether it should be allowed, Lewis sides with her readers' reservations and takes them face to face with the failure of medicine throughout time and how it affected the patient, their family and the treating physicians. However, her brilliance emerges in how she doesn't make excuses for the failure, rather, she suggests it as a form of medical evolution to her readers. Why?

Because medicine is not a perfect science, Lewis might argue and she poignantly conveys that medical history is riddled with disastrous beginnings that eventually laid the groundwork for medical techniques that society now readily embraces as "routine."

But she never lets her reader forget that there are people who bravely died so that we can now benefit from routine procedures.

Many scientific techniques are quite abstract because they involve things that society cannot touch and often do not understand. Before the lay person has a chance to be turned off by the detailed science, Lewis masterfully puts an abstract treatment into the palms of her readers by educating them step by step about the science behind gene therapy.

"Touch its potential, hold its infancy and feel its power over life and death," Lewis seemingly pleads with her reader.
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Format: Hardcover
In "The Forever Fix", Dr. Ricki Lewis tells a terrific story. Years ago, at the dawn of genomics, bioinformatics and "personalized medicine", gene therapy was lauded as the next big thing. But serious problems occurred and clinical trials were effectively banned. More recently, gene therapy has picked up steam and several breakthroughs have been achieved. Dr. Lewis brings a deep knowledge of science and the scientific method, as well as the broad skill set of the experienced writer, to her description of how gene therapy restored a young boy's sight. This is a wonderful tale of human interest and a compelling overview of the field of gene therapy. Highly recommended for a general audience as well as researchers and physicians.
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Format: Hardcover Verified Purchase
I started out as just another pre-medical freshman at Duke University in 1988, but I soon discovered that there was a prevailing mentality ruling mainstream science that was anathema to me, so I failed to thrive and maintain interest in the health sciences, bouncing around from one field to another within the sciences over the years.

Most recently, after an aborted educational start in the field of natural medicine, I've come to the conclusion that -- aside from a much-needed nutritional revolution, the other half of what simply must happen in order to advance a TRUE health improvement revolution -- we simply must attack those intractable problems of human health for which dietary and nutritional changes simply would either not be reasonably sustainable, or at all sufficient.

Much to the enraged chagrin of the Rockefellerian petro-pharmaceutical mafia that has ruled human health since the very late 1800's, we must find a way to actually repair maladaptive genes themselves and finally break the shackles of undue drug dependency once and for all.

With all that said, I was delighted to find Ricki Lewis' book. She, perhaps alone, truly gets it. She truly understands that the nature of the problem is, as she so rightly puts it, "science for science's sake", rather than for the sake of the greater human race who sincerely needs what would otherwise be its civilizing fruits. Dr. Lewis has written a book that, to my knowledge, is singular of kind: it really gives a damn about the good, and shows us clearly and plainly how we may not only get there, but how we have already begun to get there -- to lasting and humane fixes rather than deliberately temporary and purely profiteering temporary band-aids.
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