Children, ages 3 to 10 years old, armed with scooters and energy, will take over Palisades Charter High School for the inaugural Scooter for Batten Scoot-a-Thon on Saturday, May 21. Participants will stand alongside The Charlotte and Gwenyth Gray Foundation to battle Batten disease.
Charlotte and Gwenyth Gray, among an estimated 10 children living with the disease, are now set to start a new clinical trial at Nationwide Children’s Hospital in Columbus, Ohio. The clinical trial will be funded by the family foundation’s fundraising efforts.
The sisters, daughters of Palisadians Gordon and Kristen Gray, were diagnosed with Batten disease, a rare and fatal neurodegenerative disease, in 2015.
Since the Gray Foundation’s establishment in June 2015, an estimated $3.5 million has been raised of the foundation’s overall goal of $10 million.
About $1 million more is needed to fully fund the initial clinical trial and make it available to other children suffering from the disease.
“The most direct way to correct a genetic disease is to restore what is missing and that is precisely what we have done in the work with the first patient with this devastating disease enrolled in the trial,” said Jerry R. Mendell, MD of Nationwide Children’s Hospital, in a press release.
“We are working side-by-side with the Gray Foundation to make this approach available to other children with Batten Disease CLN6,” Mendell continued.
Proceeds from the Scoot-a-Thon will go toward further research and treatments for Batten disease.
Participants will compete in age groups—3 to 4 year olds; 5 to 6 year olds; 7 years old and above—for 15 minutes around the Pali High track.
There is no registration fee and each participant will receive a cape.
The event includes entertainment, food and prizes, such as tickets to “The Voice” and spa packages.
For more information or to register, visit curebatten.org/scooter.
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