Where the Vikings crossed from the North Sea into the Atlantic.
Not specifically aimed at anyone in particular I just want you all to know that progress is ongoing and it is still uphill work.
There was less before 2007.......................progress has been made and will continue to be made.
PMR GCA uk and PMR GCA Scotland, both operate on a shoe string. PMR GCA uk, only has 2 part time workers, the rest are volunteers, as the support groups are run by volunteers. Scotland has volunteers only.
Patients on this site and Patient info, many of them do not join and pay membership fees, or even send a one off donation.
Just in case you think, who is she to say this out loud.
Yes, I am one of the original five who met on Patient info, (2 who are still active and volunteering) got together with another 19 people and Professor Bhaskar Dasgupta (the one man who had a dream) paid for a meeting place, tea/coffee and lunch in London, The remaining 24 paid their own way (from all over the UK) and for the majority that meant an overnight stay and for 2 people - a taxi 283 miles each way - (as the rail lines had failed) on 14 March 2008, that meeting decided to set up a charity to support, raise awareness, set up support groups and finally research (the latter being very expensive . Scotland already had a charity, run by one lady, - to whom I owe a lot.
Our small set-up (3 at first then 6 all volunteers (only one who did not have either PMR or GCA ) in the North East, managed to make a DVD on both for Patients and Families and also a booklet called 'Living with PMR and GCA'. We applied to the Regional Lottery Fund and managed to get £10,000 over 2 years...........which enabled us to produce the above and also the Conference in the Centre of Life, where we launched the DVD and the Charity and I met PMRpro. Open a website and produce a Newsletter, both called 'You are NOT Alone' just like the DVD.
Over 12 years we managed the following:
1) Due to a legacy from one of our members, to donate £8,000 to Sarah Mackie to enable one of her med student to raise the rest of his fees to go to Spain for one year to study Micro- vessel imaging in relation to GCA.
2) We also funded the NHS, with £1,000 for the research project 'Your Ears'. Before we could get them interested, one of my Consultants talked to us about what he had found.......so we did a lot of background work and we proved this research needed to be done. Only the NHS will undertake research, when the end result means there is not money in it.
That research resulted in the 8th Cranial Nerve involvement paper published last year, which hopefully will be added to, in the future, the diagnostic procedures.
3) Dr Helen Twohig (researchgate.net/profile/He...) We helped with her research and does sterling works with OMERACT, just like Sarah and PMRpro and Lorna.
4) Then when we closed down last year, we gave the QE hospital, one of the Consultants Saravanan Vavidelu who had been with us since day one as a patron, just like Sarah, £10,000 to train GPs in the North East and Cumbria
This is the project in PMRpro's reply "Send a copy to Sarah - who is to be involved in a GP training scheme in the north East".
How many members did we have - not many in the great scheme of things:
We started out with 13 in Gateshead and 24 in Middlesbrough and 2 Consultants who helped us till the end. The biggest membership we ever had was just under 200. Membership fees were £5 to start and finally ended up at £12. Family, friends and carers who came to the meetings - no charge at all.
Members who were patients and their family and friends, raised money for us constantly . The man who now runs the North East Support Group and members of his family ran the GNR each Year and another Trustees daughter and Son-in Law did the same.
There were other notable people - who walked, ran, swam, baked, started up a Group Walk who paid £1 to walk with the group once a week and ended up always in a Cafe and raised over £2000. A teacher who developed PMR and her class raised money then the school adopted us. I could go on and on.
Believe me, the last 12 years have made a big difference - more GP's do know about GCA & PMR, there is now a Fast Track System in place in some hospitals, but an underfunded NHS, a shortage of Consultants, GP's and money to train staff on new equipment means not all are able to put it in place.
Rome was not built in a day, however I wanted you to know, that you can make a difference if you put your shoulders to the wheel and see what happens.
And every penny you can spare.................it is welcomed with open arms and a big many 😊😊😊😊😊😊😊😊😊😊
Well I think I have said enough and in a way, that is my rant over.
I leave you with this: which was launched in a Press Relase in August 2008: and you can still fill it in - costs nothing.
Furious Five’s Trans-Atlantic Hunt over Baby Boomers Mystery Illness
IS IT A FIRST? INTERNATIONAL ONLINE SURVEY LAUNCHED DEVISED BY PATIENTS FOR PATIENTS LOOKING FOR A CAUSE AND CURE FOR MYSTERY ILLNESSES PMR AND GCA (POLYMYALGIA RHEUMATICA AND GIANT CELL ARTERITIS)
Patients from the UK & USA have collaborated to devise and launch a Global Online Survey, which will provide data, free of charge, to Patients, Researchers and Medics. It could be the biggest online survey (quantisurve.com/cgi-bin/pmr...)
of its kind ever and may help reveal the cause(s) of two debilitating, life changing illnesses.
The full release is available via a PM with your email.
jinasc also known as Hel, and mrsK. Who had GCA and got out of her pram when she discovered that no progress had been made in 21years - how did I discover this, my Mother had both 21 years previously.
Good Grief asked me to edit this post and add the bit below.
To join or donate: pmrgca.org.uk/how-to-help/
Thanks for this jinasc. History always matters. Was going to pin but beaten to it. 😘