Trying to do my bit although small. I have delivered informaton on Hughes syndrome, found on the Hughes syndrome foundation web site
I took it to the local hair dressers explaining with a note that as they may hear of someone with the symptoms they might be able to pass on the information. Lucky still able to walk well.
I have written to two magazines asking them to mention Hughes syndrome, with a bit of my story.
Trying to think of something else I can do as I am no longer able to work
It gives me something to feel useful for.
Oh yes and I would also like to be part of the research thing sorry brain gone back to sleep