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.
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.