Musing after the Roadshow

I attended the Leeds roadshow last week and learnt about the immune system and how doctors make diagnostic decisions. However, I also learnt that whilst there are around 800 'paid up' members of the PMRGCAuk charity, this forum has several thousand forumites! (I think the figure was 3,000 or 5,000) That fact led me to think that if more people paid to join PMRGCAuk, how much more the wonderful folk who run the charity could do to raise the awareness of the two conditions. The charity is run by volunteers and the equivalent of one full-time member of staff, made up of part-time positions.

I consider the £10 I paid last year to have been the best investment in my health care EVER! The support I get from this forum is invaluable and I would never have found you all if it hadn't been for the PMRGCAuk website.

I realise that many of you are in countries sprerad all over the world, but if every UK forumite joined the charity, that make a big difference, I'm sure.

Food for thought for you all!

Best wishes.

12 Replies

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  • Hi Rugger,

    Good point, well made! What's a tenner a year nowadays for most.

  • Hear hear!

  • Well written and a great request.

    I became a paid up member last year and have been looking forward to renewal time. I've attended every local support group since. The advice and guidance is invaluable and it happens each day. As it takes so long to get a Doctors appointment, the support, guidance and things to try, gets you over most worries. It's such a complicated and varied illness, you never know if you've caught something different, just over done it, or life is getting you down. So many times I've been able to move on, confident in the next step forward.

    Thanks to ALL those caring people who support this charity. Please give generously.

  • Agree wholeheartedly.👍

  • We have overseas members and have had from the beginning. We keep in contact via email and they get their information pack, which contains a DVD, Booklet 'Living with PMR and GCA', Steroid Medication record book and Alert Card and various other items. Yes, we charge the membership fee plus overseas postage for the pack.

    Who are we? PMR&GCAuk North East Support, Charity Reg No 1138409 run by 7 volunteers (all Silver Surfers) and 4 helpers who do not have either PMR or GCA they are our best friends.

    Every support group in the country is run by volunteers - they welcome people and if anyone offers to help............that is a bonus.

    Food for thought - Yes, yes and yes.

  • And worth adding - quite a few people on the forums are members of one of the other 3 PMRGCAUK charities: the Northeast sambucca has mentioned, the Northwest and Scotland. Scotland was first, the NE was second and had the second forum after the patient.info one which was where the English charities were conceived.

  • Hi Rugger

    I came across this site by chance a few months ago. Although I don't often post things, I do read every day. It is a brilliant sight and I would gladly become a paid up member if you would tell me how. Others may also want to know. Best Wishes.

  • Hi Rugger

    I came across this site by accident a few months ago. I don't often post comments but I do read every day. It is a brilliant site and I would gladly become a paid up member if you would tell me how. Others may also wish to know. Best wishes.

  • Thank you for your interest,

    Go to PMRGCA.co.uk and from the Home page, click on 'Get Involved' and then choose 'Become a Member'.

    Let's hope this generates lots of new members for the charity, so they can keep up the good work.

  • Thank you. Will do that. Have a nice weekend in the sunshine.

  • I will gladly join.

  • Thank you Rugger for your great comments. Glad you gained lots of information from the Leeds Rheuma Research Road Show. There will be a further 6 RRR shows round the UK over the next 6 months and we will be making the information gathered available for everyone via the web after that.

    It will make a huge difference if members of our forum join PMRGCAuk. The bigger membership is the more powerful when campaigning for all with PMR or GCA; also spreading the word to some of the thousands of people who need support but don't yet know about the UK charity and all that it does.

    Best wishes

    Penny

    Chair of Trustees

    PMRGCAuk

    pmrgca.org.uk

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