Hollywood producer raises money to save daughters from rare brain disorder
Hollywood producer, Gordon Gray has begun an effort to raise $12 million for medical research to save his daughters from Batten disease
Hollywood producer, Gordon Gray has begun an effort to raise $12 million for medical research to cure his two daughters (two years old and four years old) of an impossible rare brain disorder called Batten disease.
Batten disease is a rare disorder that, as the Grays write on their fundraising website, could leave their daughters blind, immobile, cognitively impaired and eventually dead between the ages of six and 12.
“In February of 2015, we had an EEG which showed some brain abnormalities and followed that with an MRI. The MRI came back with some white matter abnormalities so the specialists recommended genetic testing,” the Grays recount online. “It was March of 2015 that the results came back and Charlotte was diagnosed with Late Infantile-NCL Batten Disease CLN6. Not only was this a very rare disease but the specific variant, CLN6 was even more rare.”
The Grays' youngest daughter, Gwenyth, received the same diagnosis shortly thereafter.
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Gordon Gray, whose work includes “McFarland, USA,” and “Miracle” has enlisted the help of his network in Hollywood to both start The Charlotte And Gwenyth Gray Foundation and to bolster his fundraising efforts.
Deadline.com reports that this list celebrities includes:
“Rihanna, Dwayne Johnson, Megan Fox, Mark Wahlberg, Channing Tatum, Jenna Dewan Tatum, Seth MacFarlane, Jennifer Garner, Jon Hamm, Jessica Alba, Eva Longoria, Jessica Biel, Ali Larter, Darius Rucker, the musician Juanes, Walking Dead star Norman Reedus, Julianne Hough, Brooke Burke, Molly Sims, U.S. women’s soccer star Alex Morgan, basketball player Jason Collins and NFL quarterback Andrew Luck.”
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“There is nothing more devastating than watching your children suffer,” the Grays wrote online. “Our definition of suffering has changed quite dramatically with this diagnosis and we are hoping to shield them from the pain that many children with Batten disease have experienced, paving the way for new outcome. Thank you for joining us down this difficult road to fund a cure for Batten disease.”
You can donate to The Charlotte And Gwenyth Gray Foundation here.
Matt Lee is a Web producer for Metro New York. He writes about almost everything and anything. Talk to him (or yell at him) on Twitter so he doesn’t feel lonely @mattlee2669 .