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The Forever Fix: Gene Therapy and the Boy Who Saved It Hardcover – March 13, 2012

ISBN-13: 978-0312681906 ISBN-10: 0312681909 Edition: 1st

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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: 9.4 x 5.1 x 1.2 inches
  • Shipping Weight: 14.4 ounces (View shipping rates and policies)
  • Average Customer Review: 4.8 out of 5 stars  See all reviews (34 customer reviews)
  • Amazon Best Sellers Rank: #737,280 in Books (See Top 100 in Books)

Editorial Reviews

Review

"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.


More About the Author

On a bright September Sunday in 2008, 8-year-old Corey Haas walked up the pathway to the Philadelphia zoo holding his parents' hands, looked up, and screamed. It was the first time he'd seen the sun.

Four days earlier, Corey had undergone gene therapy for hereditary blindness at Children's Hospital of Philadelphia. An eye surgeon had gently placed billions of viruses bearing healing genes just beneath the rods and cones of Corey's left eye. Now, at the zoo, seeing the sun hurt.

Corey's suddenly restored vision marked a renaissance for gene therapy, a biotechnology sadly sidelined nine years earlier when an 18-year-old died in a similar experiment in the same city, also in just four days.

The Forever Fix tells the riveting saga of gene therapy: how it works, the science behind it, how young patients have been helped and harmed, and how researchers learned from each trial to inch one step closer to its immense promise, the promise of a "forever fix" - a cure that, by correcting a problem at its genetic roots, doesn't need further treatment.

Corey's inspiring true story unfolds against the backdrop of other children receiving gene therapy since the field was born in 1990, and those looking ahead to it in the coming months. The treatments pioneered on their rare diseases will reverberate to many more common illnesses. The compelling voices of the children, families, researchers, and physicians at the forefront of this biotechnology relate the ups and downs that have led to its recent success, and looming acceptance. And no one has told these intertwining stories - until now.

The Forever Fix, dedicated to the children of gene therapy, is a celebration of science, medicine, parent activism, and most important of all, hope.

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 it's 10th edition), she has also written hundreds of articles for trade and specialized magazines, including Nature, Discover, and The Scientist. She is a hospice volunteer and frequent public speaker. Ricki lives near Schenectady, NY, and as much as possible in Martha's Vineyard.

Follow Ricki Lewis on Twitter (@rickilewis), on her blog Genetic Linkage (www.rickilewis.com), and at https/www.facebook.com/rickilewisauthor.




Customer Reviews

4.8 out of 5 stars
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Well written in a language to be understood by all.
Kelly
I have a child with LCA, and I was anxiously awaiting this book to come onto the market so I could read it.
JP
Lewis does an excellent job of unraveling the history of gene therapy layer by layer.
Robert Derham

Most Helpful Customer Reviews

13 of 14 people found the following review helpful By Ilyce on March 16, 2012
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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6 of 6 people found the following review helpful By Robert Derham on March 20, 2012
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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4 of 4 people found the following review helpful By David Lemberg on March 29, 2012
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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3 of 3 people found the following review helpful By Eileen OBrien on November 12, 2012
Format: Hardcover
I enjoyed this book so much that it has prompted my first review on Amazon. Dr. Lewis describes the evolution of gene therapy over time as different ways to deliver working genes are experimented with to determine safety and effectiveness. To explain and humanize the complex science, she uses the compelling stories of patients and families with rare diseases and the researchers that support them.

Like many things I read about rare disease communities, this book made me cry, cheer, shake my head in sheer amazement at what these families have accomplished and, ultimately, left me inspired. I highly recommend reading this well-written book to get a glimpse into the dedicated scientists and pioneering families who are taking medicine to a whole new level.
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2 of 2 people found the following review helpful By Mrs Lee Ferguson on January 12, 2013
Format: Paperback Verified Purchase
I don't remember how I came across this book, but I am glad I did. As a biology teacher, I'm always looking for books to recommend to my students, and this one does not disappoint. Ricki Lewis takes you through the good, bad and ugly history of gene therapy by telling the stories of the individuals who have been treated for various inherited diseases using this technology.

Lewis is a fantastic storyteller and teacher, making the very technical aspects of the biology involved easy to understand for laypeople. I plan on using parts of this book during the genetics unit that I teach later this semester, and assigning it as a book for my students to read next year.

Even if you're not a biology lover, this book will definitely pique your interest.
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2 of 2 people found the following review helpful By Calli on September 21, 2012
Format: Hardcover Verified Purchase
The Forever Fix is a great read. Ricki Lewis delivers the history of gene therapy and tells the incredible story of Corey Haas in a way that is smart and engaging. The author makes the technical process easy to understand, even for those of us who are not scientists.

The Forever Fix delves into other stories of gene therapy--including the epic failure that was the Jesse Gelsinger case--and provides a comprehensive view of how far the technology has come in the past few decades. This would have been an ideal book to read in some of my undergrad biotech/ human genetics courses. Given the multiple distractions of the Text Messaging/ Facebook era that we live in today, Ricki's approach of jumping from story to explanation, from anecdote to story, is refreshing and keeps readers engaged.

I currently work in the biopharma industry and would also recommend this book to professionals looking to ramp up on gene therapy, as this is surely not the last we will hear of the groundbreaking technology.
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