Joining PMRGCAuk

[marionofnorwich]

I just thought I would take a minute to point out something that I didn't realise. I have been a Forum member for just over two years now (fours years into PMR) and I have only just realised I could join the PMRGCAuk charity as well as the Forum. It sounds obvious now and has clearly been just outside my conscious recognition, but I came across an invitation to donate the other day so I thought I would. I coughed up £25 and only then realised that I could become a charity member with a newsletter and invitations to special webinars etc for around the same cost (£22). So I am rather kicking myself now for not noticing and joining rather than donating.

But it did occur to me to alert other people to the fact that there is a charity behind the Forum and that you can become a member.

[piglette]

There is also a Gardening Group set up by members of this panel. It has some lovely photos which really cheer me up. facebook.com/groups/6288051...

[123-go]

Better late than never, marionofnorwich 😀 and more than likely that the £22 will be the best money spent during your PMR journey (excluding the big party you’ll throw when you achieve remission).💐

[marionofnorwich in reply to 123-go]

Yes, well, having coughed up £25 as a donation, I haven't actually joined the charity as a member as another £22 isn't possible right now. Will have to wait to become a member...

[123-go in reply to marionofnorwich]

Apologies 🫢. I didn’t read your post properly! The donation you made was generous and will have been received with gratitude.

[Highlandtiger in reply to marionofnorwich]

Maybe ask Fran_Benson if she can transfer your kind donation to become a membership payment instead? The charity will be glad of your money whichever it is but it would be nice if you could get the membership benefits too.

[marionofnorwich in reply to Highlandtiger]

Yes, that would be a good outcome for me. I will look into it. Thank you

[PMRpro Ambassador in reply to Highlandtiger]

I thought the same and actually asked Fran if it is possible as soon as Marion posted - but its the weekend and she only reacts urgently to certain things we report. She working Monday as far as I know.

[Rugger]

We do talk about the charity quite often, especially the support groups (including Norwich and North Norfolk!); and occasional mentions of Christmas cards (sold out) and Notelets (not sold out!) pmrgca.org.uk/notelets-for-... There's also a Helpline as well as the other features you mention.

pmrgca.org.uk for others who may not have been aware.

Let's hope your £25 can be allocated to £22 membership and £3 donation.

[Zebedee44 in reply to Rugger]

I’m constantly surprised and disappointed that the people who come to the support group for the first time haven’t even heard of the charity or the forum. Having always felt so well supported by the forum I really champion it and the charity behind it.

[PMRpro Ambassador in reply to Rugger]

I think Fran mentions it approximately every month in her welcome post. But I suspect people who've been around a while ignore it thinking there is nothing for them - and they miss stuff as a result.

If you just read a post, reply without looking at the rest of the thread or never read other threads, you miss a lot. And its why we end up answering the same question over and over and over again ...

[Rugger in reply to PMRpro]

At the top of each post there's the Charity's 'banner' in bright pink, merging to yellow. If I didn't know what "PMRGCAuk" was, I'd Google it ........

I'm happy to fly the flag and volunteer. You and DL do an amazing job. 👏 👏

[PMRpro Ambassador in reply to Rugger]

Well me too but given some of the queries about all sorts of things - google apparently doesn't exist (other search engines are available)!!!!

What do you want to volunteer to do????? DL and I are only members too, no official position, and anyone is welcome to answer anything as long as it is correct info. It just so happens that for us it has become our charity work, We are both passionate about getting the world of PMR and GCA out there and educating patients so they can hold their own in managing their illness to the best possible level. And educating doctors too. And I'm really chuffed that Vanessa Quick is just as passionate about things and is hoping to get PMRGCA more visible in many ways.

[Rugger in reply to PMRpro]

I already volunteer, but sorry I was ambiguous! Hence "I am happy to....". I set up and now help run the Yorkshire support group and help with Charity mailings.

Outside the Charity, I volunteer as a 'subject' for research and training. (for my Rheumatologist who is a Patron of PMRGCAuk)

[PMRpro Ambassador in reply to Rugger]

That's what I was thinking so it didn't make sense at one level!!! You mean you enjoy volunteering - as so do we, or we wouldn't do it. I hear so many bemoaning they can't do this that or the other that they used to do as volunteers - but there is plenty of admin stuff that can be done from home. And if people thought about it - when you go out to volunteer, it usually costs you something in the way of fuel to get there. Put it in a piggy bank and over a year it goes a long way towards a donation if you feel you can't afford the whole annual fee at once.

But it must be put in context. Something our generation is very bad at is looking at a price and thinking it is extortionate because it was maybe half that years ago. But if you look at £22 a year membership as 42 pence per week, £1,80 per MONTH (£1,70 per 4 weeks). Even in Wetherspoons a coffee will cost you £1,56. (I can't believe I had to use them as an example).

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Dread to think what a £1.52coffee tastes like - but as I’ve never set foot inside/or likely to a Wetherspoons I’ll never know! 😳

[PMRpro Ambassador in reply to DorsetLady]

I have been dragged kicking and screaming in the past - but would refuse on principle now. And I stick to tea ...

[Angelsmummy]

well done you for pointing that out,sure that are a lot of lovely people on here that aren’t actually paying members but guess that some just cannot afford it and government cut backs do not help either.I also give donations ,worth every penny to keep us all afloat!xx💐💐💐

[marionofnorwich in reply to Angelsmummy]

It was more that I didn't realise and put two and two together that a charity is behind the forum

[Angelsmummy in reply to marionofnorwich]

When I got diagnosed I was given bundles of literature from the RNIBWhen you are that poorly ,one only glances through all the stuff.Once I made a concerted effort to read it all I noticed the membership form etc!Wish I had done it sooner,Wouldnt have had all the yo yo ing with Pred with 2 flares.Even the Rheumy when they did my TAUS and wrote to Dr with results put in the letter that there is a contact forum to explain it a bit more.But as I said ,when one is feeling like the grim reaper is hovering at the door ,and trying to adjust to one eye,I didn’t explore much.But never mind,I’m here alive and kicking,and finally getting my head around this tapering malarkey!Lovely to see the sun today,but bitter cold.Supposedly getting better tomorrow.Roll-on spring!x😜

[PMRpro Ambassador in reply to Angelsmummy]

In case you don't see what I said to Rugger

"But it must be put in context. Something our generation is very bad at is looking at a price and thinking it is extortionate because it was maybe half that years ago. But if you look at £22 a year membership as 42 pence per week, £1,80 per MONTH (£1,70 per 4 weeks). Even in Wetherspoons a coffee will cost you £1,56. (I can't believe I had to use them as an example)."

[Angelsmummy in reply to PMRpro]

I have not had ANY input on price of membership!Far as I am concerned it is way too cheap for people that can afford it,those that can’t,it is a shame,and I would be more than happy to pay for somebody who can’t afford it.😜Unless of course you are referring as to what I said about the little girl who wasn’t grateful for her fiver for Xmas?xx😜

[PMRpro Ambassador in reply to Angelsmummy]

It was more your comment "some can't afford it" - often people will claim I can't afford that - but happily find the money for other things ...

[Angelsmummy in reply to PMRpro]

See your point,apologies for sounding snappy!As you say,people prioritise different things but health matters are utmost in mine and OHs case.He gets attendance allowance plus a good police pension but we would live like paupers for better health as no doubt a lot of people would.xx💐💐😜

[pmrdec112014]

Funnily enough I joined last week the payment was taken but I haven't had any acknowledgement of membership at all?

[Angelsmummy in reply to pmrdec112014]

Guess they are busy etc.I sent a £30 donation about Xmas time and haven’t heard as yet.Fran normally acknowledges by e mail.xx💐😜

[DorsetLady PMRGCAuk volunteer in reply to pmrdec112014]

You will do, it’s only a very small charity with mainly part-time staff..

[pmrdec112014 in reply to DorsetLady]

Thank you for the reassurance x

[Rugger in reply to pmrdec112014]

I would add that I believe it is 4 part-time staff, with one short-term contract coming to an end soon. Behind the scenes there are Trustees, Patrons and volunteers. There's no 'office', I believe they have always all worked from home!

[pmrdec112014 in reply to Rugger]

Well that would certainly explain the reason then. Thank you.

[PMRpro Ambassador in reply to pmrdec112014]

They were all off over Christmas though they are there in the background should there be an "emergency" and DL and I need support. We are their "screening" - they don't read the forum, we do. Every single post and 99% of replies (providing HU tells us they are there) ...

[pmrdec112014 in reply to PMRpro]

That's amazing. I didn't realise that. What a job you both have and do...Admirably x

[PMRpro Ambassador in reply to pmrdec112014]

I suspect very few realise!!

[pmrdec112014 in reply to PMRpro]

Well we all I am sure so very appreciate you both x

[DorsetLady PMRGCAuk volunteer in reply to pmrdec112014]

Just because we both have a handle after our names (Ambassador/Volunteer) people think we are “paid help” -we aren’t.

As PMRpro has said we both want to help others -and I don’t want others to lose sight as I did.. still working on that!

[pmrdec112014 in reply to DorsetLady]

The service you provide is second to none for sure.

[DorsetLady PMRGCAuk volunteer in reply to pmrdec112014]

Our pleasure… keeps us out of mischief… or maybe not😏

[pmrdec112014 in reply to DorsetLady]

🥰

[PMRpro Ambassador in reply to pmrdec112014]

That always makes me wonder if none might be better ...

[pmrdec112014 in reply to PMRpro]

Definitely not!

[marionofnorwich]

As for membership, it is good to keep it low and affordable. I do know people that count every penny and don't even go out for coffees but if people are better off and can afford it, one would hope they would top up with a donation. I normally try and donate to support good initiatives but it can mount up. I have quite a few memberships and normally £25 is where I start to think harder about value/benefits over and above supporting the cause itself but I really do believe in rewarding and valuing 'free' services and volunteers as I do /did a lot of that myself and know what it takes

[Angelsmummy]

Well said!x😜