I wrote back this morning to advise about this message board and gave them the cares foundation wen site to get basic info about the condtion and an idea of the International need for a 1mg pill.  With any luck, once they get the ball in motion and start to treat kids here, there will be more of a market to supply overseas also.

I don't know why I thought that writing would help---it kind of feels like I have been on "Jim'll Fix It!" today.  That is a childrens programme that they used to air in the UK when I was a kid.  You sort of write to Jim about your problem and he fixes it.   I feel absolutely chuffed to bits with having achieved this much I can tell you!