first post from john

[john]

hi samuel and malcolm,
i have to admire you samuel - while i'm thinking about how to do this you've done it!
i will do all i can to get the old crew to know about this, long may it prosper!
happy new year, and the best of health
take care - john
ps ...there have to be rules for any forum, suggest you use those that were set for the pia forum - they mainly worked!

[clare]

Hi,
Good to see you all! Thanks for setting this up
Clare

[s162216]

Hi

Thanks everyone for coming to here, I thought of the idea last night and after a bit of searching found Proboards who host forums for free although you can pay to remove advertising etc; I've listed a few rules in the relevant section, basically similar to the former PIA version but updated a bit to reflect the new forum and tools on it like private messaging.

If we can get even a fraction of the membership of the PIA forum to come here then that would be great as I know how much that forum helped me at first and I'm sure many others as well.

Get posting!

Samuel

[marksmom]

Wonderful idea! I've been feeling sad at the thought of losing such a valuable support as I do not do facebook!

Thanks!
Rachel mom to Mark 10 CVID

[s162216]

Jan 2, 2012 12:59:13 GMT marksmom said:

I do not do facebook!

Neither do I! I only have it so I can see what my friends have been doing! I probably update my wall about once every 3 months and didn't think that a facebook group would work very well for this.

[prickles]

Hi All

Thanks Samuel for starting this board we certainly need it.

Sue

[stacey]

Thanks Samuel. I was under my hubbies name on the pia but ive put myself on here - its stacey, mum to xander xla.

[john]

hi everyone,
this is just great, samuel you're a genius, and we are very lucky to have you here!
if you feel you want some help with moderating/editing what gets posted, let me know, i really owe you a favour!! it's what i did for 5 years at pia!
take care - john

[willo]

Hi all,

very glad to, still, be able to read and sometimes post relevant info. Is there a preview message feature on this board?

Happy new year to you all.

[s162216]

There is a preview message function if you click 'reply' or 'quote' at the bottom of the page/under a post. If you use the quick reply at the bottom of the page though there isn't.

John that would be great if you would help with the moderating as although its not too busy at the moment I obviously can't be here all the time! I've promoted you to a moderator.

Sam

[john]

that's fine by me sam, will do my best!!!
probably will need some practise and guidance though
night night
john

[liz2mac]

Hi John,
l was absolutely devestated when I finally steeled myself to read the latest from the PIA. Although it went so horribly wrong all those years ago, all the time it was still going I had hope that one day somebody would wake up and smell the coffee. It's ironic really; the reason that Alan Scott & I resigned from the PIA was that the greater majority of the trustees at the official launch insisted on highliting genetic research and going to our memebers to encourage them to raise funds for genetic research. Alan & I knew that this ws totally immoral as genetic replacement was never going to be the answer for the greatest majority of us as our diseases were multi gene defects combined with a trigeer that was environmental (eg, my environmental trigger was glandular fever). Ironic then that they were finally brought to there knees by the m being dropped by Jeans for Genes. John, I've lost your email address. Can you contact me on mine? Thank you so much for doing this. Ad you know my health has deteriorated over the years and I am no longer in a position to remake this particular wheel. Howver, if I can offer any support or advice it would make the sacrifices that Alan & I made all those years ago more worthwhile. I was so devestated to read David Webster's remark that he set up the HGG society with the help of some patients. I don't remember him being at the solicitors when I went asking for pro bono work on our contitiution. Nor at the dept of health when I went to gather official support. Nor at Alan's as he did all the work on getting charitable status, nor on the planes, in my cat etc as I tavelled all around the UK meeting Immunologists and those living with priamary immune deficiencies. Where was he when my dining room became an office. Where was he as I visited all the drugs companies getting funding? Where was he...........................oh well. Sorry, hurts long past but never healed. I actually feel that my lifetime of ill health has all been for nothing now. I worked so hard to get propoer help and support for all adults living with these horrible diseases and what was it for?
By the way, I don't know how much the mem & Art has been tinkered with since we set it up, but if it's still the same it is illegal for them to close down the PIA without a special general meeting of members. At this SGM members should be able to vote were any remaining funds go. Also all trustees at the time of dissolution are respobsible for how funds were spent and can and will be held to task about it by the Charities Commision or whatever they are called now.
Sorry for the rant. Liz (Estelle/Beek as was).

[john]

hi liz,
it's really great to see you here, we don't seem to have collided at the clinic for a while!
happy and healthy new year by the way.
i thought of you when i realised pia was heading for the scrap heap, and how upset it would make you feel. it was your baby, and it was sad for us all to see it go, but specially for you guys who set it up.
i think we now need to get over this, it will never ever be back in the form it was, there will never be enough cash to keep that level of lavishness afloat again. i just heard that the website is not due to close just yet, but do you know what, i don't believe anything i hear from them now, and i'm jolly glad that thanks to samuel we have this alternative forum up and running.
sorry that you're not feeling good, let's hope that the spring will make a difference - it usually does for me.
and son't ever think you can't have a rant on here, that's what we're for, amongst other things!!
hope i see you in clinic soon.
if you speak with john d at the ghu, he will give you my email address.
best wishes and take care - john

[liz2mac]

Hi Samuel,
Sorry I haven't thanked you yet for setting this up. I am more grateful than words can express that you have & have therefore enabled us to support each other. Good Job that man.
Best wishes. Liz. By the way, apologies to everybody for my haphazard typing, it comes of having to work around my nebuliser at I type! (well that's my excuse anyway)

[lyndar]

Hi all

Thank you Samuel for setting this up. I no longer post very much due to a bad experience on the PIA website but like to drop in from time to time. I keep a look out for problems people experience at work to see if I can help there.

Thank you again, it is good to know we are all still able to contact each other.

Namaste

[gilliem]

Belated good wishes to all for a happy New Year. It's so good to be able to come here and find familiar names and some new ones as well.
Thank you Sam.
Best wishes,
Gillie.