Description
The Charlotte and Gwenyth Gray Foundation was founded in 2015 by Kristen and Gordon Gray when their oldest daughter Charlotte was diagnosed with CLN6 Batten Disease at the age of 5. Days later, her younger 3-year old sisten Gwenyth also tested postive.
The Gray's were told by doctors there were no treatments and no cure. That they should plan for the inevitable, and that their lives would consist of wheelchairs and the slow daily demise of their daughters, who would likely never celebrate birthdays beyond the age of 12. This cruel neurodegenerative brain disease not only takes the lives of children, but it slowly robs them of their quality of life. Parents of children with Batten Disease watch, helplessly as their children lose their ability to run, walk, their motor functioning, the onset of blindness, and eventually bed ridden, unable to speak, and the total loss of all bodily functions. This disease robs children of their joy, of simple hugs, fun and laughter and devestates the parents who love and must painfully watch the demise of their child.
The Gray's refused to accept this diagnosis and inevitable outcome and established the Gray Foundation to collaborate with top research universities to fund cutting edge Batten Disease research, raise awareness and provide support to other Batten families.
In 5-years, the Foundation raised over $7 million and received FDA approval for the first-of-its-kind clinical trial which has now treated over 15 children nationally. The Gray Foundation remains committed to raising research funding, providing financial support to parents, and will not stop until BATTEN is CURED.
Please join us and visit curebatten.org. Because - UR the CURE.