Stories From Main Street: Tenafly Teen Part Of Autism Clinical Trial
TENAFLY, N.J. (CBSnewYork) – For any parent of a child with autism, hope can be found in a red-haired freckle-faced girl named Rebecca Singer from Tenafly, WCBS 880’s Sean Adams reported.
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“Rebecca is 16-years-old. When she was born she had a lot of developmental delays,” her father John told Adams.
He said they had Rebecca’s genetics tested.
“We found out that she was missing a piece of chromosome 22,” he said.
Rebecca has an extremely rare condition called Phelan-McDermid Syndrome, which causes autism.
“She doesn’t speak. Rebecca needs assistance with just about everything she does,” John said. “She’s learning at a school – the REED Academy, the school that we helped start – all kinds of grades, skills like to load the dishwasher and clean the table. But she still needs someone by her side.”
John Singer is a tough advocate who started that specialized school and wrote a handbook for parents with special needs children.
He’s made that handbook available for free download at his website – Drive4Rebecca.
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He fought to get Rebecca into a clinical trial at Mount Sinai Hospital.
Ten patients will receive alternating rounds of a placebo and a growth factor hormone similar to insulin. The study was first done on mice.
“There are deficits in the way that synapses connect to one another and those deficits were reversed when IGF-1 was administered,” said Dr. Alex Kolevzon with the Seaver Autism Center.
He hopes that if they can improve communications between neurons they will see improvement in behavior, language, and movement.
“It is possible that if you could use a medication to improve that communication you can effect not just one single gene cause of autism but perhaps many different causes of autism,” he said.
A digital language processor is listening for pre-speech vocalizations.
Motion sensors and a 3-D computer avatar will measure any physical improvements.
John Singer is trying not to get his hopes up. No one expects a cure, but perhaps this could lead to a treatment.
“I know no matter what happens they’re going to learn something from it,” he said. “I’m just excited that she’s in, that she has a chance.”