Join PMRGCAuk and help us help each other!

[Polywotsit]

Dear HealthUnlocked friends,

As a charity PMRGCAuk exists to provide support, spread information and awareness, and promote research. Don't we just know that this is one of the most unresearched illnesses you could imagine! For example, for every one study on PMR or GCA there are 20 on Rheumatoid Arthritis (not that I would wish RA on anybody!).

In providing support we really need support from you. If you would join us by becoming a member (£10 a year unwaged, £20 a year waged), you would be helping us a lot and giving yourself a voice in the organisation. Every member gets a vote at general meetings. The membership form can be downloaded at pmrgcauk.com/contact_us.html

We also need to find ways to raise money to keep the charity afloat. Donations can be made online at uk.virginmoneygiving.com/gi... Just enter PMRGCAuk in the charity search box.

If you know anybody who would be interested in undertaking some challenge, like cycling from Lands' End to John O'Groats as Mark Nichols is doing for us, please let us know.

Don't feel that by being part of this community we expect you to make a donation or become a member. That would be completely wrong. You are the people this charity exists for. But if you would like to help we would be so grateful!

yours

Kate Gilbert

Chair, PMRGCAuk

[hiandri]

Hi Kate,

First, what does waged and unwaged mean, I have never come across those terms?

Second, I tried to join the other day but couldn't . If I recall correctly it was because I live in New Zealand and the way the form was set up it would not allow me to complete the transaction - or have I doe something wrong? Happy just to make a donation.

Third, is there anywhere on the site that lists books that people may find helpful, if not, how about we start a list the can be easily accessed and members can add to it? Suggested format for the way the list is done. General Topic (eg. Stress; Pred, Research;PMR etc)- Title - Author- Approx. Cost - Source to buy - possibly say 50 - 100 words on what it is about. What do you think?

Keep up the great work, it is appreciated,

Regards

John

[Polywotsit PMRGCAuk team member in reply to hiandri]

Bless you John. Sorry I didn't reply straight away - am away from home with a hopeless connection. Waged means in paid employment (including self-employed). unwaged means not in paid employment, e.g. on a pension, unemployed, or doing voluntary work. I'm not surprised if you have problems registering as a member online, but of course you are welcome to make a donation! As soon as I get home I'll be finding out the cost of posting the book to NZ. As far as other books are concerned, it's a good idea. Would you like to do it (only kind of joking).

[hiandri in reply to Polywotsit]

Hi Kate,

You must be up at the crack of dawn! We are so reliant on technology it is really frustrating when one is struggling to get a signal! Sure, happy to start putting together a list of books that people with PMR and GCA may find of value, including lifestyle and managing stress. Kate, drop me an email.- [e-mail] I'll start drafting something up, if people can email suggestions that would e appreciated. Once I get something together I email it to you for polishing! and to work out how to include it on the site.

I have just started reading 'Coping with Prednisone', no doubt you have read it, written by a doctor and her sister. First thing I did was go to the index and looked up PMR, GCA, Aspirin, Tapering Recommendations etc - not there! Must write to them and tell them before doing the next edition they need to contact you, DL and PMRpro!!

Waged/unwaged - learn something every day!

Kind Regards John

[Polywotsit PMRGCAuk team member in reply to hiandri]

Great, thanks! As admin I can 'pin' a post so it is always visible in the right hand bar of the screen. So we could do that.

[hiandri]

Thanks Kate, leave it with me, may take a little while, especially with my trip coming up, but will make a start and get back to you. Cheers John