Friday, June 15, 2012

CRPS RSD Awareness Ribbon , which is the right color?

I have a lot of patients writing to me asking me about an awareness ribbon for CRPS / RSD. They want to know which is the official one, official color, etc.

All I can tell you is American RSDHope came out with a National Awareness Ribbon, which you can see on the cover of our website, American RSDHope, back in the 90's. Of course it said RSD Awareness back then, that was before everyone made the changeover to CRPS Type I and II. When the official changeover occurred , we made that changeover as well. 

Before the RSD/CRPS Community chose the colors, red/orange combination with flames representing the burning pain of CRPS, we talked with many, many patients individually and in support groups around the country about the choices available, both on-line and the ones that met in person. We even talked about it at one of the conferences we held. It has been many years now but we even held votes in some of the larger groups and on-line. That was some fifteen years or so ago so I don't remember the exact details, some of you who were around the internet and the online groups may be able to refresh my memory on the exact dates but it took place over many, many months. We went back and forth, coming up with exactly the right color choice. Our biggest concern was of course, not wanting to choose a color that was already being used by other causes.

Red was discussed, as was purple and orange. But these colors already were taken by many causes. Take orange for instance. Orange was being used by many causes such as Cancer Awareness,  Agent Orange, Multiple Sclerosis, Feral Animal Awareness, Hunger Awareness, and quite a few more, and so many of these were well established causes. If you google Orange Awareness Ribbon it will probably bring up a page or more of causes associated with it. We didn't want to get confused with them, or more importantly, simply lost among them all.

We also wanted a color that brought the disease to mind when you saw it and orange didn't really do it, neither did purple, or red. It kept coming back to some sort of combination of red/orange. So we had a design drawn up using both colors AND flames! It was perfect and was a big hit! We added the website to the ribbon so when people saw it they would not only see what it was about but be able to go somewhere for more information. In addition,  we are able to protect it so it could not be used and abused by who knows who, or duplicated all over the place and end up like so many of the other ribbons out there. After all of these years, we have managed to keep it from being duplicated and at the same time it is on thousands of vehicles all over the United States, on thousands of websites, Facebook pages, and by November of 2012 it will be available for people to use in their daily emails if they wish.

Anyone who would like a copy of the jpeg file to use for their website, Facebook page, twitter account, and soon, Emails, can get it for free just by CONTACTING US VIA EMAIL. Support groups can put it on their website, use it at their meetings or conferences, etc., just send us an email and let us know and we can send it right out to you! All we ask is that you don't try to make any money off of the image, the ribbon.

The only items American RSDHope has used it on have been sold either at cost, or at cost plus shipping and we have also allowed other groups/individuals to use the ribbon for fundraisers, conferences, or unique items as long as the money went towards CRPS research.

We updated it a couple of years ago when we updated the website to include CRPS so it now says CRPS/RSD, instead of the old designation of RSDS. 

If you don't have a copy of the jpeg file for your website, Facebook page, or would like to add it when you send your email, etc.; CLICK HERE and I can pop it back to you. It is a very clear file and you can even re-size it if you need to. 

So if you would like a copy, just go to our website, click on the contact us section, and ask for a copy of the ribbon to be emailed to you. Or you can CLICK HERE AND LEARN MORE.

If you do pop over to the website to get your own copy of the ribbon, why not take a few minutes and share a little bit about yourself with us? How long have you had CRPS? How did you get it? What have you done that has helped you or conversely, have you tried any treatments that made it worse? This type of information helps us learn more about the disease and aids us in helping your fellow patients. We do not share your personal information and/or emails with anyone else unless you have given us express permission to do so.

In the meantime, we have a MENTOR PROGRAM if you would like to help other patients.

Are you a teen with CRPS? If so, we have a very active RSDHOPE TEEN CORNER for those who are 14-21 and have CRPS.

We are always looking for CRPS patients to have on file when patients call in seeking others in their area to connect with, to chat with, meet for coffee, share local info on Drs., maybe even start your own local support group!

We ONLY give out your information if you have told us it is ok ahead of time and usually we send you the other person's contact info and let you know they are seeking people, and leave it up to you to contact if you want to.

We also have a LOCAL SUPPORT GROUP section on the site and all sorts of links in the LINKS SECTION (click here and then select from the drop-down menu)

The national CRPS awareness ribbon is already on hundreds and hundreds of websites all over the web, stopped counting a few years back. Let's keep adding them until it is everywhere! 

While you are on the website, check it out! Especially if you have not been by there since we gave it a new look earlier this year and we have been improving it each month since. It is an ongoing project and I think if I had one or two full-time web-design volunteers I could keep them busy with projects!



American RSDHope

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