This is an article that Kate asked me to write for the next newsletter. I thought I would post it here too. It's a bit long winded but may be useful to anyone planning an event.
On the 6th and 7th of October last year I decided I would like to do my bit to raise awareness of Hughes Syndrome and held an art event at my home. It sounds very simple, but as you all know, nothing is simple with Hughes! It all started a couple of months before by asking lots of people if they would help me make this idea come to fruition. I have long been going to a weekly art class and my art teacher very kindly said he would do an art demonstration on one of the days. I am also lucky in having some very good friends, some of whom paint beautifully, and my son works as an art tutor in a rehabilitation centre and also does private commissions. We also had some wonderful fused glass jewellery, stained glass panels and some great sculptures and textiles. All contributors kindly agreed to donate 20% of any sales to the charity.
On top of that, a local small business made absolutely delicious, gluten-free cupcakes, also on commission, and all washed down by copious amounts of tea made by yet another lovely friend!
Of course, before we got to the day there was huge amounts of work to be done! The living room, conservatory, studio and kitchen had to be prepped. Our spare bedroom, which is downstairs, had to be made into another viewing room, so the bed had to be dismantled and professional hanging rail fitted throughout the house by my long suffering husband. Meanwhile, I was painting and cleaning anything that stood still, so that we looked ready to receive lots of visitors.
Having amassed over 75 pieces of artwork they all had to be hung, priced and catalogued. My hands (and brain) don't work properly, so, again, this was done with the help of friends. All the glassware, sculptures and textiles had to be collected and displayed. Raffle prizes had to be found and publicity leaflets printed and distributed. I wrote a piece for our local paper, advertising the event, but also describing the symptoms of Hughes and promoting the website, and submitted it with photographs, ready for publishing. Posters were put on notice boards, in halls, shops and libraries. Our local village news mentioned it three times in the weeks leading up to the event. We could do no more except wait...
How lucky were we? Both days were fine, bright, and most importantly, dry. I charged everyone a £1 entrance fee and gave everyone a Hughes leaflet and this brought in over £100. We provided plenty of smaller items for people to buy with prices ranging from £1 to £200 and the raffle raised a further £150. Having taken out expenses, and with the help of a couple of generous donations I was able to send the Hughes Syndrome Foundation £731.22.
I would encourage anyone out there to do something similar as I thoroughly enjoyed the process. However, there are consequences, and to be honest, it took me weeks to recover and it involved a lot of work by other people, so you need that backup. If you are tempted then always provide a variety of work and prices. Charge an entry fee, if applicable, but provide free tea and coffee. Always have a raffle and, most importantly, advertise, advertise, advertise! We can't all run marathons or raise millions but if we can raise a bit of money, whilst at the same time raising awareness, then it has to be a good thing.
Stella Brabants
Can our children be tested for Hughes Syndrome
No one will help,
Need to confirm once APLS is "triggered" by being immobilized during a surgery, the antibodies are activated for the rest of my life.
New article in April edition of Choice magazine
