It's been a while since I sent out my last blog. Life has been quite hectic since I came back from my holiday in January. Once I settled back into the swing of things and a routine, I helping to put together the First NMO Conference in Australia in Melbourne, which took place on March 17th 2018. I organised all the marketing side of things. I had a pretty clear picture in my head as to what I wanted to organise, however I didn't realise how much work would go into it.
I sourced everything on the internet, which took me a good two months of working on it, every day to get the right product and price, as most of it wasn't available in the shops. The things that I organised were - part of the logo (this took many attempts) and designing it online combined with the words put together by Debbie who organised the conference. Then I thought it'd be a great idea for people to each have a bag with the logo on it, full of useful goodies on the day. I organised and designed flyers and additional information plus had it all printed. Plus loads of water and lollies, balloons with the logo as well as getting them blown up. Writing note pads, pens, stickers for names, wrist bands with the NMO words on them. Special pens and so much more! Then once everything had arrived I packed 60 bags full of all the same items. Great fun and exhausting with a body that has the disease, and is compromised from C4 to T8 permanently. However will power and shear determination took over!!
It turned out to be a fantastic day with 28 people coming from all over Australia, and one from NZ, plus 30 carers, friends and supporters. Plus 2 Neurologist from Australia and a leading specialist on the disease who spoke from the US via a link up, and a sensational Psychologist. It was brilliant to meet people who I'd only ever spoken to on the net for years, as well as hear peoples stories, and catch up with wonderful friends I hadn't seen for so long. I came home on such a high. I was asked to do a 5 minutes speech however we ran out of time so I said I'd do it on YouTube and send it through to the chap that was doing all the work in putting together a full video re the day. That was a tough experience even though I thought it'd be easy. I did a video and posted it on Facebook, however I felt I could do better. Then he told me I had to do it in landscape form, which I did.
However it took me weeks to do because my experience with the disease dates back to 2004, and SO MUCH happened when I was so ill over so many years. The shortest I could get the speech to was 13 minutes, then 20 minutes being the remake and better version. It also brought back so many vivid memories for me, not all of them easy to re live as there were very difficult times that occurred over many years. To this day I am not sure how I made it through to where I am today! I was wiped out for a few weeks after the conference however it was all so worth it.
Here are some photos from the day. It was difficult to take photos as I couldn't move between the tables due to lack of space, plus I hadn't taken my funky camera. However this was an incredibly important day, and I loved every moment of it. Enjoy sharing it with me :)
That's me in blue below in the front. Unfortunately I don't own any green. :)
THE INTERNATIONAL COLOUR FOR NMO IS GREEN.
THE BAGS BELOW ARE ONES THAT CAN BE USED FOR SHOPPING, and fold up as well. This is what my unit looked like for quite a while :)
BELOW IS THE 20 MINUTE VIDEO THAT I DID.
BELOW IS THE SHORTER SPEECH
IF YOU'D LIKE TO BUY A BAG OR WRIST BANDS, PLEASE CONTACT ME.
THE BAGS SELL FOR:- $10.00 PLUS POSTAGE. There are only 46 left over from the conference. I won't order any more at this stage unless there is a huge demand for them.
THE WRIST BANDS SELL FOR:- $10 FOR MINIMUM ORDER OF 10, PLUS POSTAGE.
CONTACT ME AT:- firstname.lastname@example.org
ALL MONEY WILL GO TOWARDS CHARITY TO THE GUTHY-JACKSON FOUNDATION IN THE USA WHO DO A LOT OF WORK TOWARDS CURING NMO.
WE HAVEN'T YET SET UP A CHARITY IN AUSTRALIA, HOWEVER THAT WILL HAPPEN IN THE FUTURE.
In a wheelchair permanently since early 2010 due to a disease called NMO. I am loving getting out and about in my wheels. My blogs capture my journey.