The Forever Fix gang: Corey Haas with book, surrounded by mom Nancy and dad Ethan Haas, Ricki Lewis on left next to Lori and Hannah Sames. At book signing 3/24/12, Barnes + Noble, Albany NY.


The Forever Fix: Gene Therapy and the Boy Who Saved It (324.0KB)
flyer / handout

Tags

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

Archives

Genetic Linkage

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…)

Be the first to comment

Selected Works

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
DNA reflects who we are -- but it isn’t the whole story.

Quick Links

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
Sylvia Browder's blog for women entrepreneurs
An interview about "The Forever Fix"
The Art of Relating BlogTalkRadio.com with Christine Kniffen
7/9/12 hourlong discussion about rare diseases + The Forever Fix
MesotheliomaHelp.net
MesotheliomaHelp.net recommends The Forever Fix
Voiceamerica radio show
Kathryn Vox radio show, including "The Forever Fix"
UGS (Universal Genome Sequencing) in the Mid 21rst Century -- Scientific American guest blog, 6/​9/​12
A look ahead, based on recent reports on genome sequencing + privacy
www.genetherapyreview.com
How "The Forever Fix: Gene Therapy and the Boy Who Saved It" Wrote Itself
WOCA The Source podcast, May 21, 2012
WOCA The Source radio show podcast about The Forever Fix, May 21, 2012
The Ann Parillo Schenectady Today Show, April 17, 2012
TV segment on "The Forever Fix: Gene Therapy and the Boy Who Saved It"
A Tale of 2 G-Spots Scientific American blog 4/​15/​12
Genetics trips up G-spot doc
Vanquishing "Mossy Foot" with Genetic Epidemiology and Shoes Scientific Ameican blog 4/​17/​12
"Podo" is hideous, painful, isolating -- and completely preventable, with shoes.
The Making of a Mutant: A Fruit Fly Love Story Scientific American blog 4/​14/​12
Bodice-ripper version of my PhD work on Antennapedia flies
Are DNA Patents Doomed? Scientific American blog 4/​3/​12
A brief history of patenting genes, current controversial cases, and a look ahead
"The Roundtable" WAMC Albany, NPR station, March 15, 2012
Joe Donahue interviews Ricki Lewis about "The Forever Fix: Gene Therapy and the Boy Who Saved It"
New Hope for Gene Therapy: A Young Boy's Fight Against Blindness
A short video about Corey Haas's gene therapy -- the subject of my book, "The Forever Fix: The Boy Who Saved Gene Therapy"
Publishers Weekly starred review
first advance review for The Forever Fix
Corey Plays Little League
A wonderful video of the family at the center of The Forever Fix: Gene Therapy and the Boy Who Saved It
http:/​/​www.amazon.com/​Forever-Fix-Gene-Therapy-Saved/​dp/​0312681909/​ref=sr_1_1?s=books&ie=UTF8&qid=1319811119&sr=1-1
Forever Fix amazon.com page
http:/​/​www.nxtbook.com/​nxtbooks/​rpi/​2011fall/​#/​20
Article on leptin and Jeffrey Friedman in RPI alumni magazine
http:/​/​facebook.com/​rickilewisauthor
The Forever Fix: Gene Therapy and the Boy Who Saved It
Alden March Bioethics Institute blog
Alden March Bioethics Institute blog
The American Society of Human Genetics
Authors Guild
Advocates for published authors since 1912
Authors Guild Directory
A compendium of member websites