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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

"Dignity Therapy" Paper Ignores Hospice

July 10, 2011

Tags: dignity therapy, Harvey Max Chochinov, Sarah Palin, death panels, bioethics, hospice, Ricki Lewis, Glenn Nichols, Community Hospice, ALS, end-of-life care, palliative care, hospice volunteer, Randy Pausch, The Last Lecture, When Evening Comes, When Autumn Comes

”Dignity therapy" is a “novel psychotherapeutic approach” that gives patients with a 6-month life expectancy “an opportunity to reflect on things that matter most to them or that they would most want remembered.” In these days of medical experts such as Sarah Palin equating reimbursed end-of-life discussions to death panels killing granny, an outcomes evaluation of any such intervention is essential. (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.

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A one-hour interview, mostly about why gene therapy has been beneath the radar.
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