Wednesday 15th August, 1.30 @ Rettondon Memorial Hall Main Road Rettondon Common CM3 8DP Guest speaker: Madeline Whitlock Clinical Nurse Specialist Rheumatology Southend University Hospital Group organiser: Pat Fedi Contact details: southend@pmrgca.org.uk 07733362373
if you want more information or just attend on the day admission £3 tea/coffee/biscuits included - raffle to raise funds - free parking
By chance, do you know of any meetings in Canada? I’ve tried Google but only this forum and a Facebook group showed up.
Hi again
If you google PMRGCA Canada something does come up - it seems someone was trying to get a group started, in the US initially, but with enough interest they would have liked to have started one in Canada. They were trying to get as much interest as possible, I see there were 49 replies, but that was 3 years ago and the site is no longer running due to inactivity. It also asks that if you are interested to contact again with a view to starting a new group - or resurrecting the old one - but there will have to be enough interest in the first instance. Read the googled site it will explain more fully, I've only given you a potted version after a quick glance.
PMRGCAuk is a charity led by a Doctor, who has the illness, running a small team of volunteer admin staff, so you can see it has to have real commitment and good organisation to be a success.
Hope that helps and good luck!
If you mean Kate - she isn't a medical doctor.
I have seen her called doctor so took it as such - she must have a doctorate of something, do you know what hers is in?
It is a PhD but I can't remember what in, sorry.
That's okay, I doubt it will make much difference to PMRCanada but at least she/he can see your comment. They don't seem to have an active website over there at the moment. I've done my bit.
I know - and I have also posted elsewhere repeatedly that nothing comes from nothing and the work that has gone into forming the 4 UK PMRGCA charities is enormous. Scotland already had one about 10 years ago and they advised the Ladies who met on the original forum on patient.info about forming first the NE of England charity and later the national one. If you want a support group when none exists - you have to start gathering the building bricks.
The lady who was the driving force of the NE group still participates at times in this forum, as do a few of the others. Ten years ago there was virtually nothing in the UK - this lady met Ragnar (the originator of the Dead Slow approach to reducing when he couldn't get below 5mg without flaring) via a Canadian website even back then but it disappeared. I was part of a US forum but it started coming up as "risky" and it too disappeared. A few of the people there joined the patient.info forum. I think Kate was the person who posted there to suggest something needed to be done - and the rest is history as they say.
Well there you go, those dedicated to the cause must get so frustrated at times and I think it's more than a full time job too. It takes a lot of dedication to run a website and the constant monitoring of it once up and running, I don't think it's realised just how much. It's even more difficult for an illness that no-one knows about until it affects them, I'm not going to say or someone they know because that doesn't impact either. Lets just hope that we continue onwards and upwards as they say, it deserves to.
GCA and miserable day.
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