Recently SJS published two articles from parents of children who were participating in trials for a experimental drug called Arbaclofen (stx209) which was being assessed for effective use in treating Fragile X Syndrome and Autism Spectrum Disorders. From AutismSpeaks.org:
““Arbaclofen is the most important compound in clinical development in autism today,” said Robert Ring, Ph.D., Autism Speaks vice president of translational research. Moreover, arbaclofen derives from the already approved drug baclofen, used to treat muscle spasticity. This means that this class of drugs has already undergone considerable safety testing.”
Like the parents in those two articles, many parents have found Arbaclofen to be a miracle treatment for their children, who have previously had significant functional difficulties, and were shocked to find out that the Arbaclofen trials were being shutdown (before FDA approval) due to funding issues. These parents are now trying to form a coalition to pressure the government to resume these trials and to bring awareness to their plight. From Courtney Abouelseoud, a Fragile X parent:
A few weeks back you shared a couple blogs of parents who were participating in the arbaclofen (stx209) drug trials that were terminated prematurely. Now, some other parents involved in the same trial have come together to try and do something about it. I would appreciate it if you could share our page and help us out. You can read about the goals and direction of our group in the about section on the page. We are looking for other parents or participants in the autism and/or fragile x Arbaclofen/STX209 trial and subsequent extensions to share their stories as well.
Find more information about, and support Fragile X and Autism Families for STX209 by “liking” their Facebook Page.
Our other Fragile X articles:
The Words Of A Mother Desperate To Protect Her Child: Fragile X Part 2
What Happens When A Drug Trial Ends And A Child’s Health Fails?
Written by Matthew Cohen, MSW
SJS Staff Writer
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