Why don't we make Mon 14th April International RSD?CRPS e-mail Awareness Day.
Everyone emails their President/Prime Minister, National and local politician.
The day before your national and Local papers asking them to print them.
If you are up for this and willing to spread it on other forums/websites please sign below

Sounds great Kev! How about a sample of such a letter?
Or maybe we could get permission from RSDHope organization
to use something they have?

If we get enough interest I was going to ask Brambledog to do one. She's much better with words than me

Why of course I will Kevin always nice to have ones skills appreciated lol!

Bram.

The trouble is getting sufferers to actually do anything to help themselves. 95 views how many sign ups.

"The trouble is getting sufferers to actually do anything to help themselves. 95 views how many sign ups."

A lot of people with CRPS are doing a huge amount to help themselves every day. They may just not be doing what you want them to do!

November has already been proposed and used in previous years as RSD/CRPS awareness month by a few groups in the USA. 14 April often falls within Easter school holidays (always in Scotland where the 2 week Easter school break is fixed regardless of when Easter falls). A date when many people are on holiday may not be the most effective timing.

I wonder if you have heard of Rare Disease UK? Its a relatively new organisation dedicated to raising awareness and obtaining better treatment for those with rare diseases which would include CRPS. They have done a huge amount of very effective work in a relatively short time including lobbying and influencing MPs. They have an annual Rare Disease Day in February for which they already provide a whole suite of logos, banners, posters, template letters etc, etc all of which is very impressive and is available in multiple formats to download and use. It is suitable for customising for specific conditions within the remit of rare Disease UK. It would be worth looking at their website and seeing what they already do.

Perhaps integrating your idea for CRPS awareness into Rare Disease Day would be a more effective way to achieve the sort of outcome you are looking for and someone else is doing all of the massive amount of work to provide the necessary materials. People can run their own activities as part of Rare Disease Day or link into one of their organised activities.

I think you also have to accept that not everyone with CRPS wants to be involved in awareness raising or communicating with their MP. Other people may not agree with the particular message you are putting across or might not agree with some of the things you are saying. There will be many people who are just too unwell to get involved and others whose CRPS symptoms are minor so they won't identify with what you are trying to do. You have chosen to undertake these political awareness activities presumably because you feel that they are the right way for you feel you can make a difference but other people may not share that view or they may be approaching awareness raising in different ways. I'm not criticising, just trying to explain why you can't expect everyone to want to do the same political awareness type things that you want to.

He is so right..You are the Best for words....