Surprise surprise! Here I am back again – apologies for being AWOL – absent without leave – but these things happen.
Sorry I have neglected you and Twitter, Facebook, MySpace and so many other ‘pies’ I have my fingers in but quite a lot has been going on in my life… for example 2 young grandsons and you all know how much time that can take… not to mention a heavy workload.
To be honest I am here this time to answer a few questions and take you back to 2007/2008 when with dear friend, Sarah, pre my commitment to FMA UK working as a Regional Coordinator. I persuaded her to help me organise the Folly Pogs Ball. Why Folly Pogs – don’t ask – I cannot remember why but folks remember it…. except the F and P represented Fibromyalgia Philanthropists.
WHERE AM I COMING FROM?
Driven by a passion to get funds for research I wanted to help to find a cure and the cause of this rotten invisible disability called fibromyalgia. As I said I have two grandsons under 5 and 3 children and I would not wish this condition on any of them, although I believe one of my sons has all the signs. So I had to get off my butt and do something about it.
What Folly Pogs had not planned for was the financial crisis which started to bite in the autumn of 2008. Our event was scheduled for September that year.
We had big plans but sold so few tickets we were advised to give the ticket money back to keep our reputation in tack. We lost money on the entertainment and missed the chance to get the stars of The Calendar Girl stage production to come to the ball with several Page 3 girls. It was a big disappointment.
This is the report FMA UK carried for me as at that time
As you can imagine Sarah and I were both feeling dejected and decided in the New Year to do a Mother’s Day pamper event. Bad weather and possibly personal celebrations and bad weather reduced our income from that night to £82 instead of the estimated £500.
Yes it was bad luck. After the dust settled in the autumn of 2009 I once again pressed my friend rather heavily and got her involved in the first Fibromyalgia Conference & Pamper Weekend in April 2010.
Although my friend was a ‘normal’ and keen to help a friend, I managed to kill off her enthusiasm for the next conference. In a weak moment on April 26 2010 when vulnerable I had yes I would do it again and had to get on with it.
We could have not find the funding for a cameraman/filmaker to capture the weekend so we can have DVDs and allow some 170 FMA UK groups across the UK to hear the speakers in their own meetings as another means to raise funds for research. Sponsorship is still hard to get.
FMA UK came up trumps and provided the conference bags for which we were grateful and we duly stuffed the bags with all things FMA UK and other bits and pieces. This year we are anxious to find literature and goodies for the bags which may well have been Tesco plastic shoppers – the white recyclable ones that disintegrate after about 4 weeks making an awful mess on the floor. But Labrha, a French supplements company came to the rescue and provided purple bags.
Pam Stewart came to the conference to fly the FMA UK flag with her exhibition stand and helped folks find groups if they did not already belong. This year at the second conference FMS SAS also had an information table organised by Nicholas Bond GL for Worthing & West Sussex FM SG and a FMS SAS Trustee.
We knew we wanted to raise funds for research but we also knew we had big expenses to meet, so in April 2010 we dedicated the funds from the raffle, tombola and a charity auction to the Folly Pogs FM Philanthropists research fund then boasting it’s full and more respectable name. The raffle and tombola raised approximate £800 and the charity auction raised a similar amount £801. With a donation from Nene Valley FM SG and other financial gifts we now have £1770 in the account. More recently we had had further donations totally another £650 plus – thanks Marie Caroline, Cherry and an anonymous donor. So we are heading in the right direct.
A REGISTERED CHARITY
It was my hope that by now we would have raised £5,000 for this fund to become a charity before the base figure rises to £10,000. A few of those fibromite who know our background and what we have been trying to do, have agreed to become trustees once we are accepted by the Charity Commission. Currently we are Not-for-Profit but that does not open the doors of grant making trusts. The Trustees will eventually claim funds from grant making trusts and decide how and where the money is spent. Some of these prospective trustees may be your friends.
This year we ran another conference in April 2011 but due to rising costs and the VAT increases, the lack of manpower it is unlikely we will raise as much for research as we did last time, sadly. However the event with 14 speakers, 14 workshops, 6 exercise programmes and pamper tasters and one to one therapies was another success. There were disappointment in the planning and two big names dropped out after we believed for 9 months that they would come. This was a big disappointment. But my dear ‘normal’ friend Sarah, and my family, dragged me back to work, I regained my sanity, and it all worked out very well. My dear late Mother always said, “Things happen for a reason. As one door closes, another one opens.” I am still waiting for the opening door but I live in hope. Maybe some kind millionaire will read this and make a handsome donation. Is that the opening door I am waiting for I wonder?
THE BACKGROUND TO MY PASSION
The background to my passion about research goes back to 2006. I had visited the States for an NFA conference and was overwhelmed by the knowledge they had that we had not heard of. They were light years ahead of us.
The manufacturer of a topical pain killing substance offered to fund a book if I would write it. I agreed, went home and started researching and writing. Buy sadly he wrote from the States and said his company was having a bad time and could not the fund the book.
It was thanks to FMS SAS that as a member of their group since 2003 when I was diagnosed, I was able to visit the California conference and produced a comprehensive report for them.
In 2006 I started the book ‘for real’ and began seeking funds wherever possible. I had intended to finish it pre the April 2010 conference but suddenly the April 2011 conference got in the way as well as my work with FMA UK. There were just not enough hours in the day.
I am now keen to get this done as I have pledged money from sales to the Folly Pogs FM Philanthropist Research Fund UK.
It is my hope the book will be completed soon and will go on and on and the trustees will continue to seek funding for research when I have left this Mortal Coil.
On that happy thought I had better get back to the drawing board, finish my paperwork and get back to the book. You never know I might yet fight my way back onto MY Twitter section which is currently inhabited by squatters.
If you feel as strongly as I do about the lack of Government funding for research to find a cure and the cause, and feel like pressing your MP to ask that question in Parliament, look up your MP on TheyWorkForYou.com and just add your post code and you have the details. You could ask him if we can have a Fibromyalgia Flag Day – that would help too.
If you are in the mood to do some fund raising for research on the INTERNATIONAL FIBROMYALGIA AWARENESS DAY, MAY 12th and want to donate your funds to research, I would love to hear from you. Once we are regsitered we will look at Gift Aid. Email me at firstname.lastname@example.org if you want to help and be involved in our research project. I always have time for fibromites and those willing to back our research project.
Take care, keep well, good luck on May 12th. Fibro hugs Jeanne