Thursday, May 30, 2013

STX209, the trial that became a trial

It doesn't matter where we are in life, what experiences we have, or what lifestyles we have, there is always something that connects us to many others--strangers--in fact, as a group that seems to work as one.

Photo by Pointe Digital Photography and Videography

I have heard several times in my association with the Fragile X Community Melissa Welin quoted as saying something to the effect, "this is the best club you never wanted to join."

So when I hear all this news around me that a successful trial drug for Fragile X Syndrome has been cancelled because of funding, it breaks my heart.

My children were never part of the Seaside Therapeutics STX209 (Arbaclofen) trial. I do not have to come to an abrupt end of watching my child change in so many positive ways because of an ending trial. A trial that was supposed to continue until it was FDA approved.

I empathize with those parents of children who were on the STX209 trial. I ache for them, knowing the anxiety and fear they must feel as they await the last day they give their dosage of the trial medication and sit, watching, for all the great progress they have seen fade away.

There is no cure for Fragile X Syndrome. Medications only help improve some of the symptoms such as anxiety, ADHD, and cognitive abilities (to name a few).

I am sorry these parents are going through this.

I wish I could do something other than sign a petition to help them.

I wish I had all the money in the world so that I could help them and my own children to continue to discover how many things our children can do with medication help.

If you would like to read about some of their experiences I am including some links below:

Holly's Story

Melissa's Story

Bonnie's Story

Courtney's Story

Kristie's Story

From one mom who didn't have the experience of the STX209 trial to many others out there I do hope you know I am thinking of you often and wish you and your families the best and hope it will turn out better than you ever even dreamed.

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