The PKU board sounds like a good idea.  Certainly I would do it if ther arn’t any as PKU is something that occurs more than CAH is it not and I would imagine it is needed. 

I don’t think a great many people even think to look to community’s on the Internet sometimes.  I know I did not until a problem cropped up.  There must be many out there who would probably do that if they knew they could communicate with other’s that way.

Last week I started writing to newspaper’s everywhere to ask them to put an advert in the paper.  Althought it will only be a one off, it may catch people’s eye.  I started off with the UK for now and because there.  Problem is, there are MANY newspapers and local rags etc, it took forever just to do the Uk.  I wrote direct to the Editor’s of each one and mentioned the condition being so rare that people are sometimes isolated and may not know of communities online.  Sent many off this week and just asked for the notices to be put in the community news sections of the newspaper free.  I’m on Ireland now!  Next Wales and Scotland.  Aussie next. (Already did New Zealand--that’s where it all started--I sort of thought well if I can do NZ, why not everywhere else?) After the other places I will be drawing out of a hat.

I would suspect that from that there may be a little more traffic if the newspapers publish the adverts.  I thought it was a mammoth task until I accomplished all the newspapers in the UK in two days and then I thought maybe it is not such a silly idea after all.  Many people will see the advert.  On the radio and TV it is sort of there and gone in a flash, but a newspaper sort of sit’s around a little longer with it in.  Maybe you should do it in the US alone Danny, as I could imagine it would take some time, but well worth the effort.

 I would never have been put in touch with the New Zealand support group but for an advert in our local rag.  My Mother rang me as she saw it and told me the address to write to.  I think once you have a  friend whose child is diagnosed or a relative, it is hard to forget the name so I guess many people who have firends or family will do as my Mother did 5 years ago or so.

Regards

Anne-Marie