You heard it right, I remember what I was going to post about!
I have been thinking on this for a while now, and talked to my hubby about it, and all. But I was thinking that maybe we need to start OUR own website to compile, share, and communicate for next years Summit. And maybe it will help to get the name of RA changed to something else.
I am not able to convey what I am saying as I am not totally sure what it is that I am trying to say the website should be about. I tried to explain to my hubby what the objective of the website was, but I failed to get it across, but I think that is because I am not feeling well and all.
I know so many of you would like to do something about how RA is represented, and change many things that keep RA downplayed. I just want to help to do something about it and the best way I know how is thru a website that is accessible to millions of people.
So, whatcha ya'll think?
Oh and just incase I did not convey what I was saying to make sense, but only to myself, once again
See if this helps...
LetsChangeRA.com -- that is what I was thinking the web addy and name of the website should be and sums it all up for what I was thinking the website's goal should be.
I think it's a great idea Joonie. As I am up to it, I would like to contribute to it. It would be nice to have a Press Release section about RA facts and stories.
One of the things we really need is an Ad Campaign like they do sometimes for the Heart Association, Diabetes, etc. Ignorance seems to be one of our biggest battles.
It is about making the whole world aware of what RA does to a person as well.The public do not have the facts.We know about MS. cancer, heart problems, diabetes and so we should but RA is also a chronic illness and being ignorant about it makes people behave unkindly. I think an Ad campaign is such a great idea. Until I was diagnosed with RA i had no idea about it and thought it was something my grandmother would get.I certainly never knew that children had it. I told someone that I had RA and thier reply was "oh you are getting old before your time". I wasnt angry with them just angry with their lack of knowledge. It needs to be a huge campaign as there is reading material out there but unless its a family member(sometimes not even them) no one can be bothered to read through booklets. A celebrity who has RA may help. I know Kathleen Turner has RA , I was reading on her website about lack of knowledge of the disease but I wouldnt know how to go about contacting her agents.
If you need any help from the UK I will be more than willing.
In the US, they have the AD council. I wonder how one gets their help. You'd think the Arthritis Foundation would do this. Advertising and PR are part of my work background. But I just am not able to do this kind of stuff right now. But some how, we need to find the right people to influence.why don't you start with your local arthritis foundation chapters. They can do a lot more but they lack the volunteers. In the meantime write letters to your local papers, volunteer to speak to health classes at the local high school, or the local junior league. Work to change those you can within your circle of influence and that circle grows. The Susan G Koman Breast Cancer Foundatin started locally and now see where they are.