On June 9th, Hollywood’s biggest stars took to social media to show their support for producer Gordon Gray and his fight to find a cure for Batten disease. Batten disease is a rare brain disorder suffered by so few that research to find a cure has been minimal, and tragically, both of the producer’s two daughters – Charlotte, 4, and Gwenyth, 20 months, – were diagnosed with the rare terminal illness.
The girls’ mom Kristen Gray says, “The geneticist told us there was limited data out there, but that this was a neurodegenerative brain disease that would leave our daughter blind, immobile, cognitively impaired and eventually dead between the ages of 6 and 12. There are very few families in the world with this, and most specialists know very little about this disease. Our world was shattered.”
Gray Foundation from Anaconda Street Productions on Vimeo.
I was in shock from the moment I got the news, and I felt like if I kept moving and digging and fighting, I wouldn’t lose my mind. [A doctor] said, “I have something here that I believe will be a cure, but there”s no funding for it right now. Nothing. You would have to personally fund the research, the trials, everything, including the surgery.”
The Grays created The Charlotte and Gwenyth Gray Foundation in order to raise the 10 million dollars needed to fund the research and experimental treatments. The foundation partnered with IfOnly.com, (an online marketplace that donates a portion of its sales to charities, to offer once-in-a-lifetime experiences) and challenged everyone to give $1 to “The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease” in the hopes of raising both awareness of the disease and 10 million dollars in funds for research and experimental treatments.
On June 9th the internet was a-buzz with the #curebatten hashtag and celebrities such as Gwyneth Paltrow, Mark Wahlberg, Channing Tatum, Jennifer Lawrence, Jeremy Renner,Jennifer Garner, Kate Walsh, Jessica Biel, Jessica Alba, and Dwayne Johnson and have all shown their support for the cause.
My husband Don Diamont and I both recently attended a fundraiser for these beautiful girls. A Tea for Two party was held at the Brentwood home of Tracy Maltas and was hosted by Ali Larter, Sasha Alexander and Angie Harmon.
The lovely garden party was quite emotional, with all who attended saddened by the girls’ plight but hopeful there is a cure to be found. To learn more about the milestone goals and how your donation can be used to help save Charlotte and Gwyneth Gray, please read more about the project here and please do what you can to help, either with a monetary donation or by sharing the girls’ story.