Charlotte And Gwenyth Gray Update 2021
Charlotte and Gwenyth Gray Update 2021
Charlotte and Gwenyth Gray, daughters of sports film producer Gordon Gray, were told by doctors to prepare themselves for their children to become wheelchair bound children with an incurable neurodegenerative brain disease that would gradually take away motor functions, eyesight, and eventually their minds before most likely dying by age 12 as predicted by doctors.
Brineura, an innovative gene therapy administered in liquid form, offers hope to the girls’ family. Brineura contains an oligonucleotide drug combination and gene transfer agent targeting CLN6 gene mutation causing Batten disease; its development is being overseen by Anavex Life Sciences of Arizona.
To create the drug, oligonucleotide drugs must first be chemically altered to target specific gene mutations that cause diseases. A gene transfer agent then delivers these modified oligonucleotide drugs directly to mitochondria of cells where they bind with and change function of mutant genes – in an effort to slow or stop progression of disease progression.
Once parents of two girls with Batten disease were informed they faced an imminent diagnosis, Hollywood and other celebrities rushed to fund research. They quickly formed the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease and raised millions within months – funds which go directly toward funding clinical trials that they believe offer hope for their daughters.
Recently, two daughters under an FDA-approved clinical trial at Nationwide Children’s Hospital in Columbus, Ohio received their initial treatment using Brineura; though it doesn’t treat their variant of Batten disease (CLN6) directly, they’re hopeful this breakthrough can give them back some speech and gross motor abilities for normal childhood experiences with family.
The Grays have recently announced their plan to launch The Gray Academy in Los Angeles as a school dedicated to serving students with special needs ranging from neurological diseases and traumatic brain injuries, providing physical, occupational and speech therapies for these youngsters. Their ambition is to open similar institutions nationwide.