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Glenn Nichols, surrounded by his hospice team. The author is in yellow.

Genetic Linkage

Max Graduates!

June 4, 2012

Tags: Canavan disease, gene therapy, Ricki Lewis, The Forever Fix: Gene Therapy and the Boy Who Saved It, Ilyce Randell, Max Randell, Canavan Research Illinois, Jewish genetic diseases

14-year-old Max Randell, who has Canavan disease, is graduating middle school!
Max Graduates!

Tomorrow night, Max Randell will graduate from middle school. He even passed a test on the U.S. Constitution. I don’t think I could do that.

Max has Canavan disease. And thanks to gene therapy, he’s here to celebrate.

Canavan disease is an inherited disease that strips the insulation from nerve cells in the brain. It destroys neural function, beginning at birth and likely before, and the child loses the battle by age 8 -- unless she or he has gene therapy, still experimental (as are all gene therapies). (more…)

The Past and the Future of Gene Therapy

April 22, 2012

Tags: The Forever Fix: Gene Therapy and the Boy Who Saved It, Corey Haas, Hannah Sames, giant axonal neuropathy, Leber congenital amaurosis, Ricki Lewis, gene therapy

Corey Haas and Hannah Sames sign their photographs in "The Forever Fix: Gene Therapy and the Boy Who Saved It."
Yesterday I had two very special guests at my book talk and signing at the Schenectady library: Eleven-year-old Corey Haas, who is “the boy who saved gene therapy” in the metaphorical phrase in the book title, and eight-year-old Hannah Sames, who will have gene therapy.

Corey and Hannah represent gene therapy’s immediate past and future. They put faces on a once-moribund biotechnology reborn after a series of tragic errors and failures. They are also remarkable children: bright, poised, aware, and charming. They are making history. (more…)

The Forever Fix is Published! A Short Reader’s Guide

March 16, 2012

Tags: The Forever Fix: Gene Therapy and the Boy Who Saved It, Ricki Lewis, Corey Haas, gene therapy, medicine, biotechnology, DNA, St. Martin's Press

Great display at Albany Barnes + Noble
Reports are trickling in as people read my new book, The Forever Fix: Gene Therapy and the Boy Who Saved It (St. Martin's Press). It’s been amazing to hear the emotional ups and downs that accompany the experience, taking me back to how I felt writing the book.

For months, the words poured out, seemingly out of my control. I’d interview parents and researchers, usually late in the day, and be unable to sleep, immersed in their stories. (more…)

Animal Research Saves Lives: A Blast From My Fruit Fly Past

March 9, 2012

Tags: animal research, PETA, Ricki Lewis, #dros2012, The Forever Fix: Gene Therapy and the Boy Who Saved It, Drosophila Research Conference

Gene therapy gave vision to Corey Haas. (photo: Dr. Wendy Josephs)
Chicago – I left fruit fly research circa 1982, shortly after earning my PhD in genetics, because I didn’t think insects with legs growing out of their heads was of much import to human health.

Although I went on to a rewarding career as a writer, I quickly learned that I was wrong about the (more…)

Anticipation

February 25, 2012

Tags: rare diseases, rare disease day, spinocerebellar ataxia type 2, SCA2, SCA1, fragile X syndrome, expanding triplet repeat, genetic testing, ALS, Lou Gehrig's disease, Parkinson's disease, Huntington's disease, myotonic dystrophy, amyotrophic lateral sclerosis, Carly Simon, Anticipation, X chromosome, ALS, mutation, Ricki Lewis, The Forever Fix: Gene Therapy and the Boy Who Saved It

Jordan and Hailey Kohl. Spinocerebellar ataxia type 2 affects several members of their family, including Jordan.
“Anticipation .. is keepin’ me waitin’,” sings Carly Simon in her song made famous in a ketchup commercial. But “anticipation” in the genetic sense is just the opposite of Carly’s croon – it means a disease that begins earlier with each generation.

Doctors once blamed patients for anticipation, as if people with sick older relatives could worry themselves into suffering similarly. Then, in 1991, discovery of a new type of mutation explained the curious worsening of fragile X syndrome: an expanding triplet repeat. (more…)

Gene Therapy Changes the Brain

February 8, 2012

Tags: gene therapy, LCA2, Corey Haas, Jean Bennett, Ricki Lewis, CHOP, University of Pennsylvania, The Forever Fix: Gene Therapy and the Boy Who Saved It, Foundation Fighting Blindness, Leber congenital amaurosis, retinitis pigmentosa, second gene therapy, Science Translational Medicine, fMRI

It doesn't take a brain scientist to see that the visual cortex of this formerly-blind woman lights up -- after gene therapy.
It isn’t often that a brain scan chokes me up, but this one did. The fMRI shows area 17 of the visual cortex coming to life in a woman born with Leber congenital amaurosis type 2 (LCA2). She’s part of the very same gene therapy clinical trial chronicled in my upcoming book The Forever Fix: Gene Therapy and the Boy Who Saved It. The symbolic boy is Corey Haas, who, four days after gene therapy in 2008 at age 8, screamed when he saw the sun at the Philadelphia zoo, his shadow world suddenly brightened. (more…)

A Textbook Author’s View of “5-Minute Publishing”

January 21, 2012

Tags: iBooks Author, Apple, iPad, McGraw-Hill Higher Education, Life, The Forever Fix: Gene Therapy and the Boy Who Saved It, Ricki Lewis, St. Martin's Press, 5-minute textbook, on-demand publishing, textbooks, Washington Post

It takes a village to produce a textbook.
iBooks Author “will let anyone make their own interactive textbook, in like 5 minutes flat,” according to several reports on Apple’s January 19 announcement. Then why did my first college textbook, Life, take 10 years?

It’s simple: researching, writing, editing, and publishing (more…)

Gene Therapy and the 10,000-Hour Rule

January 4, 2012

Tags: Gene therapy, The Forever Fix: Gene Therapy and the Boy Who Saved It, Malcolm Gladwell, 10, 000-hour rule, Ashi DeSilva, Biology Digest, William French Anderson, Donald Kohn, ADA deficiency, Leber congenital amaurosis, Kalydeco, ivacaftor, Vertex Pharmaceuticals, cystic fibrosis, severe combined immune deficiency, Ricki Lewis, Corey Haas, Jesse Gelsinger

“Breakthroughs” in biomedicine are rarely that – they typically rest on a decade or more of experiments. Consider gene therapy.

I just unearthed an article from the December 1990 issue of Biology Digest, "Gene Therapy." I wrote it a mere two months after the very first gene therapy experiment, the much-publicized case of 4-year-old Ashi DeSilva, (more…)

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…)

"Animals Containing Human Material" -- Welcome!

August 15, 2011

Tags: ACHM, animal welfare, animals containing human material, UK Academy of Medical Sciences, Ricki Lewis, The Forever Fix: Gene Therapy and the Boy Who Saved It, The Planet of the Apes, Rise of the Planet of the Apes, Asilomar, recombinant DNA research, IVF, in vitro fertilization, Louise Joy Brown, RFLPs, iPS, SNPs, Woody Allen, Jeff Goldblum, Irving Weissman, transgenic, gene targeting, Jackson lab, mouse model, Alzheimer's disease, neurall stem cells

A new biomedical abbreviation debuted July 22, ACHM (for Animals Containing Human Material) in a report of the same name from the UK Academy of Medical Sciences. ACHM will soon replace, I hope, the phrase “humans and animals,” which implies to the taxonomically inclined that we are instead fungus, plant, or microbe. (more…)

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 10th edition.
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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