Driven by my passion to find a cure for fibromyalgia, I am writing to  invite you to the Folly Pogs Ball on Friday September 12 2008 at The Chichester Park Hotel, Westhampnett, Chichester, off the A.27. The proceeds from this evening to remember with lots of laugh, fun and merriment, will be dedicated to funding research on the way to finding a cure. 

I have had words with Sue Tait, our caring and supportive Coordinator for the East Hants Borders Fibromyalgia Philanthropists Support Group (the Folly Pogs) of which I am chairman,  and in spite of all Sue's cares and woes at this time,  she felt it would be fine to send out this invitation to fibromites and  groups as some may consider bringing a coach load of members. Sue was intending to mention this  herself but as you may know she is pretty busy in a London hospital with her  husband. Ian, at the moment. We are all praying for a  a speedy return to good health for Ian and  hope that Sue stays free of flares and aches and pains.

As you will read below our endeavours are all for a very good cause  - research funding to find a cure - if not in our time then for the sake of our children. There is one school of thought that a responsible gene may be lying dormant until something like stress, trauma or even a viral infection triggers it. Scientists are discovering what new genes do almost on a weekly basis, so there is hope. They even believe  teenage growing pains are early signs of the possible onset of fibromyalgia. With no government funding to help us, it is to us to help ourselves and try and make some noises in the corridor of power... the Government. 

We are already making noises through local television via the internet and have had one interview screened. We are now working on a 30 sec.power ad which will reach 84 countries and is accessible  via the Internet. This will be followed by a 10 minute public service film to be screened by global digital TV and  we could eventually get our own fibromyalgia channel - all we need  is some money and sponsorship. A documentary maker who is regularly screened on national TV has offered to make  an FM documentary but we need to raise  big money to make the film before approaching Channel 4, ITV or BBC. If you have any bright ideas how we might achieve  this sort of sponsorship I would love to hear from you. 

When you come to the Folly Pogs Ball  you will be contributing to these huge projects and having a great night out. We are already planning the Folly Pogs Ball for 2009 and possibly other exciting events.  I do hope you are able to join us - it would be great to meet many of the people I have written and read about, doing their own  projects to raise awareness.  We will have two TV cameramen on hand at the Ball and hope to do a lot of interviews for future programmes - sort of mixing business with pleasure.   We hope by then Sue will be in a position to come and join us.  We are saving her a place. We are looking forward to meeting Lindsey Middlemass who has done such great work with  NHS Direct  and the fibromyalgia guidelines. Also Bianca Embley and  one of her calendar girls who has FM. The 2009 calendars will be on sale with Bianca. 

Our invitation to THE FOLLY POGS BALL Friday September 12 2008

This is a special invitation to  those who would have some empathy with what we are trying to do. You do not have to have FM to enjoy this evening - all 'normals' welcomed.  If you feel able to support us in trying to help ourselves,  you will have a smashing evening and be bringing hope to 2 million people who suffer with fibromyalgia.  If enough money for research can be raised, we may find a cure.  We are not asking for something for nothing - we will make sure you enjoy yourself. Come and join us.

You have heard of the Ugly Bug Ball - this will be more fun! Our event includes laughter, dinner, dancing with an award winning cabaret star, not seen in the south before and an evening filled with comedy, humour and mirth.

• Chichester Park Hotel, Westhampnett. (A27) is the venue. Overnight stay B&B is available at the hotel with a spa and pool if you want to let your hair down  - nod, nod, wink, wink ….
• Tables of 10 or 12 can be pre-booked for a party of friends.Dress code - posh frocks, DJs, lounge suits, fancy dress or dickie bow and anything... bring a smile to our faces. We might manage a prize for the best fancy dress and the daftest dickie bow!
• Three course meal with vegetarian options - menu choice  on the booking form. Tickets are £30 each for what will be a memorable evening.
• You don't have to be a fibromite to come - all you need is a sense of humour, able to enjoy a good laugh and a little empathy for our good cause – fibromyalgia research 
• Do you or your spouse have a September birthday, anniversary or a family gathering planned?  Even an event in August or October? Why not share it with us? 
• We will make sure it is a really happy celebration. If you share your party with us we will share ours with you and persuade  150 people to sing Happy Birthday or Congratulations to you  personally. Care and share it with us - it is all for a good cause – your celebration and our research.             

We are looking for goodies for the charity auction and raffle. If you have unwanted gifts, paintings you are tired of looking at, trinkets from someone you would rather forget, please let us find a new home for them. If you have  things you would like to donate, please contact us and  do tell you friends.  Sorry about the commercial but we cannot miss a trick when  you have the passion and are trying to find a cure - sorry. 

Who are the Virtual Folly Pogs?

Based all around the UK the Folly Pogs are 'virtual' members of the Fibromyalgia Philanthropists, who are keen to raise awareness and find a cure for this rotten invisible disability called fibromyalgia.  The term virtual means  there is paperwork, no post, and all communication's are carried out via email.  They are of course invited tall events organised by the Folly Pogs. 

They may however organise their own fund raising event and any Folly Pog can offer to assist or support such an event.  News of these will be posted on the Folly Pogs website -   www.folly-pogs.webeden.co.uk - created, donated and administered by Heddwen Ede, a ghost hunter, with long term chronic illness. 

Membership of the VFPA  will  include support, up-dates,  newsletters, membership of the VIRTUAL FP forum, offers and consultation on research projects.  Currently we have members on Stoke, Blackpool, and Manchester and we are looking for more.   

For those of you who are not Fibromites, we look so well but feel so awful. We would like to take long walks, go cycling, and dancing but we are just not strong enough. We don’t sleep nights, we forget our best friend’s name, start a job and forget about it and live in pain 24/7 – the list goes on and on. One fibromite was so forgetful she did not remember to go to court the day the outcome of her divorce was decided – how is that for fibro fog? Why are we doing this? Sadly because the Government will offer no funding for research to find a cure for our 24/7 pain.

Friday September 12  will be a Red Letter day for us – and we are going to have fun and a good time. We hope you will join us and would you please just for laughs, bring a joke with you that you would share with mixed company.

See you at Chichester Park Hotel, Friday, September 12th 2008, at 6.30pm for 7.00pm. Carriages at 12.30am. The hotel website is www.chichesterparkhotel.com/.

Please complete the booking form and return to The Folly Pogs, 70 The Hornet, Chichester, PO19 7JJ with your cheque for £30 per person made payable to FM Philanthropists SG and sent to Folly Pogs, 70 The Hornet, Chichester, West Sussex, PO19 7JJ with your name, address, telephone number  and email  and we will send you a receipt, menu choice and tickets.  Coach parties very welcome. 

For more information   please contact Sarah Owen at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it   or This e-mail address is being protected from spam bots, you need JavaScript enabled to view it  or telephone 01243 674447 

Sarah, a yoga teacher, is a 'normal' and I wonder what would I do without her!
Thanks for your time.  Jeanne