Gordon Gray, who has produced movies the likes of Invincible, Secretariat, The Game Plan, Miracle and Million Dollar Arm, and wife Kristen learned earlier this year that both of their daughters, four-year-old Charlotte and Gwenyth, who is barely two years old, have Batten disease, a rare and deadly neurodegenerative illness.
Being diagnosed with Batten disease is tantamount to being sentenced to death. Those who are diagnosed with Infantile NCL Batten Disease CLN6, the variation of the disease the Gordon sisters have, go through progressive neurological impairment as they often develop dementia and seizures, become blind, and lose their ability to speak and move until they succumb to the disease.
The disease is an inherited disorder of the nervous system that often begins in childhood with the symptoms appearing in patients between five and 10 years old when the parents or the doctor may notice that the supposedly normal child starts to suffer from seizures and vision problems.
Some symptoms of the condition are also subtle such as changes in the child's behavior and personality, clumsiness and slow learning. Children diagnosed with the disease become bedridden, blind and demented, with the disease often becoming fatal when the patient reaches late teens or 20s.
The disease is extremely rare; there are only two other families in the U.S. with diagnoses of the same form of Batten disease inflicting Gray's daughters. Because the condition is so rare, it does not attract much attention in biomedical research.
In their course of learning more about the disease, the Gray family met researchers from the Sanford Research, a non-profit research organization whom they are currently working with, along with another family from Israel affected by the same form of Batten disease in a bid to find a treatment for the illness.
The two families are now collaborating with Jill Weimer, from Sanford Research, and colleagues to find small molecule drugs that may treat the disease, at least in cells in petri dish. The researchers are now growing cells from the blood of the Gray sisters and testing synthetic drugs to determine which might reverse the damage in the cells.
In a bid to help raise money to fund a clinical trial, the Gray family is now helping raise $10 million through the Charlotte and Gwenyth Gray Foundation. Celebrities the likes of Channing Tatum, Jennifer Garner, Jessica Biel, Jessica Alba and Alyssa Milano are now helping raise awareness about the condition.
