PollySis

My kids have a condition that is (or was) not so well known and for some years I was involved in working voluntarily for a charity. Started off as the local co-ordinator for the West Midlands and I think we inherited about 10 or 20 members. We set up meetings, did press releases etc and within a year we had over 200 active members. Used to do the rounds as a speaker and later I edited the charity's publications nationally so went to lots of closed high level national meetings etc. Have to say I soon grew VERY despondent about that whole charity world - it's pretty cut throat. We had some people from a top London PR firm co-opted in at one point and an editor of a national magazine, and they told me that charities were far more vicious environments *behind the scenes* than any plc.... Could well believe it. The thing we learned quick was that the big charities who can afford to mailshot every house in Britain via the Royal Mail, or can afford high profile TV ad campaigns - basically those people do not need your money. They are already rolling in it. Or they couldn't afford TV campaigns. As a smaller charity, we couldn't but over time, we raised the profile of our pet disability til now it's something most professionals and many lay people have heard of and know something about.

Even so, at the end of it all I left disillusioned and feel they had thousands of pounds worth of work out of me - and others - for nothing. One of their flagship publications I edited is still for sale, 8 years or so on so they are still making £££ hand over fist from my work, and that of the writers I persuaded to donate articles. And despite people now knowing what this condition is - you know what? Makes booger all difference to the help my kids get from drs or in school. Makes no financial difference to those of us with kids with it - in fact our publicity for the condition meant that people with kids with this disability find it HARDER to get Disability Living Allowance - because we opened floodgates the government then wanted to close. So my older sons got some financial help - my younger one who also has it and is just as disabled as my 18 yr old - zero. Sorry but I wouldn't waste my time on trying to raise the profile anymore.

Re PCOS - I dunno what the problem is? I was diagnosed easily 19 years ago. No fuss, no difficulties, and was handled well and given as good info as was out there, then. I was reassured and made to feel it wasn't the end of the world. And when I was diagnosed I had already heard of it and had some idea what it was and I was zero interested in anything medical, at that time.

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