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The Forever Fix: Gene Therapy and the Boy Who Saved It (324.0KB)
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Glenn Nichols, surrounded by his hospice team. The author is in yellow.

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Genetic Linkage

Gene therapy on fetuses?

November 4, 2011

Tags: gene therapy, fetal medicine, fetal surgery, Leber congenital amaurosis, bioethics, The Forever Fix: Gene Therapy and the Boy Who Saved It, Carson Strong, Ian Malcolm, Jurassic Park, FDA, phase 1 clinical trial, Ricki Lewis, therapeutic misconception, Lorenzo's Oil, Stop ALD, adrenoleukodystrophy

Gene therapy is experiencing a renaissance, with many of the recent successes in children. For some conditions, the younger the child, the better the genetic correction, because affected tissues degenerate with time. This is the case for adrenoleukodystrophy (ALD), the “Lorenzo’s Oil” disease that strips the insulation from brain neurons. One goal of (more…)

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instruction
Project to engage students in helping families with rare genetic diseases
Book Club Reader's Guide
Many challenging questions to stimulate thought and discussion.
Instructor's Guide
38 discussion questions to get students thinking and talking about gene therapy, including the science, ethical issues, and the drug approval process.
Narrative science
The Forever Fix is the uplifting true story of 8-year-old Corey Haas, who was cured of hereditary blindness just 4 days after gene therapy.
College Textbooks
A spectacularly-illustrated, clearly written human anatomy and physiology textbook, used in pre-health profession programs throughout the U.S.
A highly engaging, clearly written, beautifully illustrated introduction to the science of human genetics for the non-scientist. Now in its 11th edition, 12th to be published in September 2018.
Nonfiction
An ideal starting point for anyone who wants to know more about genes, DNA, genomes, and the genetic ties that bind us all.

Quick Links

NPR WOSU Public Media
The Science of Gender Identity (All Sides with Ann Fisher)
DNA Science blog posts at Public Library of Science
My weekly blog posts at DNA Science cover breaking genomics news, often as personal stories, historical perspective, or looking ahead.
NORD Breakthrough Summit
Personalizing Medicine - Hannah's Story
TEDx Talk
Genetics and Reproduction: How Far Should We Go?
Interview with Filament Communications
Ricki Lewis on the Difference Between Writing About Science and Science Writing
CBC radio program about "The Forever Fix: Gene Therapy and the Boy Who Saved It"
Quirks and Quarks, Canadian Broadcasting Company, 12/22/12
The Forever Fix Critic Ratin
A one-hour interview, mostly about why gene therapy has been beneath the radar.
Answers for the Family (http://answers4thefamilyblog.com) on www.LATalkRadio.com
Voiceamerica radio show
Kathryn Vox radio show, including "The Forever Fix"
Publishers Weekly starred review
first advance review for The Forever Fix
Authors Guild
Advocates for published authors since 1912