Yours truly is at it again...

**marta** · 12-03-2011, 07:39 AM

Hi (she said with a shy little voice)...

I can't seem to stop moving my brain and it's gotten the best of me again. I have a new mission. Here's my thinking. We (as in various autoimmune disease sufferers) tend to segregate ourselves in our own diseases and because when segregated we are a 'rare few' nobody seems to care about really getting anything done to fix or find the problem. So I've been thinking that what needs to happen is huge money needs to go to reasearch to find a cure/cause to bring us back to normal or avoid future generations from suffering what we have suffered. The only way this will happen is if everyone knows about it and feels like they or their family might be at risk so that money can start going in the right direction. So I've been trying to think how I/we can raise awareness for AI diseases on a really huge scale. I think I have come up with the solution.

On rare disease day - Feb 28 - have national/international pijama day for Autoimmune Disease awareness. We're always told that we look normal/healthy but we spend so much time feeling awful in our pj's (while looking normal)... so have a full day PJ day. Why on Rare Disease day? When you pull many of the AI diseases out from under the AD umbrella, we're Rare Diseases... but together we affect more people than any other disease worldwide. It's time we stood up and became counted. If it's one in 30,000 people affected nobody really cares, but if it's one in 5 then people will pay attention.

I'm going to do all I can here in our area to promote and push to the media. I'm going to do a guest lecture at the University of Alberta. I will do a fundraising dinner gala here in Jasper, we'll do something at the ski hill, and I will talk to our schools. I will get our businesses on board and have challenges. I've contacted a couple of celebrities and will see where that goes. If you want more info go to my blog. I just posted this yesterday and the responce on Facebook has been insane-o.

It's still in the very early conceptual stage, but I'm going full board forward. The worst that can happen is that status quo remains unchanged. So that's not very bad odds. I spoke with my doc today and she loves the idea. If you have any ideas, suggestions or wanna do something on your end please contact me, and we can scheme together.

February 28, 2012 - Separately we are rare, together we are strong.

**NicShaf** · 12-03-2011, 09:15 AM

Marta,
I think you're on to something here. It is true that on our own, we are rare, but when you look at the statistics all together, the number is staggering. In my family of 5, my father and I both have AI diseases, that is 40% of our family when you think about it!
I think the same is true with any diseases...some forms of cancer are rare, but when people are raising money for CANCER, they aren't always raising for any one form of the disease, it’s for all of them...Like the American Cancer Society, it's a generalized foundation for everyone suffering from any disease that falls under that umbrella.

**freakyschizogirl** · 12-03-2011, 09:41 AM

Hey Marta - you already know my response from Facebook but i have to say again that this is a brilliant idea.

I have to agree with Nicole (great pic btw) that fundraising is too generalised for more common inflictions such as cancer that us rarer guys dont get even a look in.

I have been talking to my boyf about wanting to raise awareness and money for research in AI/Wegs but wasnt sure how to do it. He did a 25 mile walk last month for Macmillian with 3 other people who raised £400.

In my family of 3 my mum and i both have AI diseases so thats, what...66% (i'm terrible at maths) of my family affected. If we go back to my grandparents my grandad had Lupus. So scary how this has travelled down my family.

I will, however, say once again i'm not sure how suitable this will be for us Brits - Feb is very chilly....I might have to invest in a very warm dressing gown!

Al · 12-03-2011, 09:44 AM

Originally Posted by freakyschizogirl

...i'm not sure how suitable this will be for us Brits - Feb is very chilly....I might have to invest in a very warm dressing gown!

And how about us folks in the tee shirt and boxers tradition?

Al

**Dryhill** · 12-03-2011, 01:16 PM

Originally Posted by Al

And how about us folks in the tee shirt and boxers tradition?

Glad you asked that Al, I'm not sure anyone would get in my taxi if I dressed like that.

**pberggren1** · 12-03-2011, 02:14 PM

I don't wear jammies, just the gotch.

**marta** · 12-03-2011, 02:20 PM

Thanks dudes and dudettes. Nicole, before I say anything else, I have to say that I love your avatar. Love it. Sam, I bet you any money that it's colder in Canada in February than it is in the UK. Just do what we do here in the mountains - layer up. It's a survival skill for the mountains and inclement weather - layer up baby... and nothing better to layer up undder than a baggy pair of PJ's. I'm gonna push for skiing in your PJ's at the ski hill. As far as all you naked sleepers, did you see my picture on the blog? There are all sorts of cool options out there to suit every taste. It's actually that photo I put on my blog that got my 16 year old nephew all stoked about the idea and pushing me to go to the high school to bring them on board.

We've always talked about looking for celebs with WG, but boy oh boy are there a lot of celebs with AI diseases. The pool of potential support is great. Once we get them on board then we can funnel some of the attention to us lonely Weggies - who knows, this might work out or it might flop, but I'm gonna give it a go and see where it ends up. Can't hurt.

**jola57** · 12-03-2011, 05:25 PM

OMG Marta, just think of all these good year blimps in PJ's in February at work, school, shops, buses and trains, slopes. Oh be still my heart. Let's do it. One for all and all for one.