Family Let Down After Fragile X Trial Halted
After seeing dramatic improvements while participating in a drug trial, one family is unsure what the future holds for their boy with fragile X syndrome now that the trial has been canceled.
Logan Kisamore, 9, went from speaking just a few words to having a vocabulary of 150 to 200 while taking a new medication as part of a drug trial conducted by Seaside Therapuetics. He also started to form friendships with his classmates for the first time, according to his mom, Patricia Kisamore.
But now the trial has been halted, leaving the Baton Rouge, La. family worried about the future.
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“I felt like a rug had been pulled out from underneath me. I felt like I had been punched in the stomach,” Patricia Kisamore told WVLA NBC 33.
Though she remains optimistic that her boy will beat the odds, Kisamore said that other children who have gone off the medication have stopped improving.
In a statement, Seaside Therapeutics indicated that they plan to continue studying the drug and, depending on the research outcomes, it could be made available again in the future.
“The study termination is due to resource limitations at Seaside, and is not due to any safety issue associated with STX209 (arbaclofen). We know that this termination will be disruptive and disappointing for many families,” the company said.
Fragile X is the most common form of inherited intellectual disability and many with the condition have autism as well. In addition to the drug trial that the Kisamores were participating in, Seaside was testing the same medication in individuals with autism, but that trial has also ended.