Proof of concept has been provided, for example in a pioneering Phase I/II clinical trial led by Jean Bennett, M.D., Ph.D., treating Leber’s Congenital Amaurosis, a hereditary blindness which robs children of their eyesight by the time they are teenagers.
On a bright September day in 2008, 8-year-old Corey Haas went to the Philadelphia zoo with his parents, and screamed. Four days earlier he had gene therapy to cure his hereditary blindness, and now the sun was hurting his eyes. Corey’s suddenly restored vision marked a renaissance in gene therapy, a biotechnology sidelined nine years earlier when an 18-year-old died in a similar experiment in the very same Philadelphia hospital.
The Forever Fix tells Corey’s inspiring story against the backdrop of other children treated since the field was born in 1990, and those looking ahead to future gene therapy. The treatments pioneered on rare diseases will reverberate to many more common ones. The Forever Fix is the tale of a biotechnology reborn.
Ricki Lewis received her PhD in genetics from Indiana University. Her ninth book, The Forever Fix: Gene Therapy and the Boy Who Saved It, narrative nonfiction, was just published by St. Martin’s Press.
Most of her other books are college life science textbooks, including “Human Genetics: Concepts and Applications,” (10th edition, 2012) from McGraw-Hill Higher Education. Routledge Press published “Human Genetics: The Basics” in 2010. Ricki has published thousands of magazine articles, from Discover to Playgirl, but mostly in The Scientist.
She is a genetic counselor at CareNet Medical Group in Schenectady, NY and teaches “Genethics” online for the Alden March Bioethics Institute of Albany Medical College. Ricki is a hospice volunteer and a frequent public speaker (Macmillan Speaker’s Bureau). Ricki’s blog Genetic Linkage is at www.rickilewis.com and she tweets at @rickilewis. Follow on Twitter @rickilewis.
Now Pacific Film Foundation is bringing Corey’s extraordinary story to the screen, along with the compelling stories of other patients of all ages whose lives are being changed forever by gene therapy.