Here's an idea
 

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.

Well said Neurochic :)

I think that you just hit the nail on the head. Another thing is that some people just don't, at this point, have anything (or know what) to say. While I've struggled for 5 years hunting down a diagnosis, it has been mere weeks that I've had a name for what is wrong with me. I'm still trying to figure out the ups, downs, heads and tails of this for me.

On top of that, I decided a week after my doctor told me CRPS to manage to whack my hand on my bad arm with a hammer. Now I'm losing the use of my hand, and where my arm was a pilot light to my leg's bonfire, my arm is now an out of control wildfire. Plus I'm trying to get my house ready and prepared for me because I have surgery scheduled in 1 1/2 weeks.

This may not be the only serious, life altering disease some of us have also. I was diagnosed with celiac 2 years ago. I'm very active in celiac communities providing the support to new people that I needed when I was new. I also spend a lot of time reading up on new research. (I have a whole new understanding of medical terminology from medical papers.) And I've spent time writing letters and emails to politicians and even the pope to try to change the world.

It took more than a year for me to feel I understood my celiac well enough to be an advocate. It isn't that I, or others, may not want to do something like this. A lot of people just may not feel ready besides all of Neurochic's good points.

Neirochic "A lot of people with CRPS are doing a huge amount to help themselves every day."
and that's it they are unwilling to help outsiders.
I posted on here about National Awareness month in 11 or 12 and 80% of Americans had never heard of it let alone knew what month.
Had a look at Rare Disease and will contact them but 1 day a year is not going to make a difference.

This has just been posted on facebook, shows why we all need to work together because obviously they are one of the 80%







RSD/CRPS Research and Developements

3 hrs ·
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Member Hailey Nicole writes:

Hello my name is Hailey I am 21 when I was 12 I was diagnosed with crps/rsds. When I was 14 I started a health awareness bill and spoke in front of ohio state senate congress House of Representatives and so forth and finally a year ago my bill was passed in ohio and feb is crps awareness month in Ohio
If you need any help at all getting awareness out in your state or any help at all please message me I also help push young kids who are diagnosed an don't wanna move cuz it hurts move it I have helped lots of children out of their flare ups.

Doing things in the political arena is tricky. But I think if one's point of view is worded in the right way, then it could prove effective to spread awareness on this horrific disease. I don't write too well, but would be interested in getting a form letter from Bram too, if that's okay with her. I have been involved in local politics for several years and know some people who may help spread the word. Thank Kevscar for the great idea.

Why don't you all get together with Bram to come up with something and a date then post it in as many forums and facebook groups as you can.

I'm quite happy to put something together if I can have some ideas of the general ideas and topics folk think are important.

I'm good at words, it was my job for years lol, and I do think it's very important how that initial communication comes across to someone new - first impressions count in words almost more than in person. Making something too aggressive, or technical, negative, or just boring can instantly put the reader off, and they might only read a few sentences before dismissing it. And all your hard work is for nothing. Also, the actual writing counts for a lot - it's a bit like a job interview - if your spelling is poor, punctuation non-existent and grammar difficult to unravel, you will lose someone quickly - particularly anyone who deals with a lot of such communications like a press officer or newspaper editor. They like you to make their job easier, and if it all has to be rewritten to make it acceptable to their own standards, they just won't bother.

If you post your own thoughts on what you would like to say here, I'll amalgamate it all and write something anyone can send to their politician, newspaper, TV channel, local fundraiser etc. Anything that might raise awareness, educate or raise money for CRPS is worth doing.

I'd really like a sticky thread for this kind of thing too. Somewhere we could post the important stuff for people to print off - hospital protocol, fact sheets for doctors, dentists and physios, and standard letters to send to your newspaper to prompt their interest in an article. That all-important explanation of CRPS and how it affects you, to give to your family, friends and colleagues at work... But all written clearly and set out well, so that folk have the best chance of being heard and understood.

I'm not saying only I can do that lol :winky: as there are plenty of folk on here that write really well! Just that I know how important the written word is, and how easy it is to get it wrong. I'm lucky that I can write fairly well, and I appreciate that it's something a fair number struggle with through no fault of their own.

Oh dear, hope this hasn't sounded too preachy. I get a bit passionate about writing! Anyway, my point is, yes I'm happy to create something if it's useful. Just give me some ideas and I'll get onto it with pleasure :)

Bram.

I was wondering if anyone knew how to get people at like grocery stores to ask for donations like a dollar donation for rsd. I see them do it for cancer, ms, diabetes, alzhiemers and lupus ( which are all terrible conditions too) but I never see any for rsd. How does one get someone to recongnize rsd? Would a letter to our politicians make it possible to do that. It would not only raise money to hopefully find a cure for rsd but would help raise awareness too. Any thoughts would be much appreciated.

Thanks Kev for this great idea and thanks Bram for taking the time to write something up. That was really nice of both of you and I really appreciate it.

Normally this is the sort of thing that is organized by a charitable organization. I see them "locally" all the time for a large, regional children's hospital that probably covers more than just our state for treatment. There are also many that are organized by national organizations and do a nationwide, month-long drive of this nature, partnering with as many brands and stores as they can get. I think for it to be successful it would need to be set up through an already existing organization. Anything else could make people a little skeptical about where their money is going and make them unwilling to donate. It's a good idea though, and I think that getting one of the organizations to do it would be awesome.

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

You are a great person..keep pushing ahead..:winky:

Some thoughts?
 

Hi Bram, I hope you're feeling better today. I see you some ideas on what to write. I'm not really good at writing and putting thoughts together, but I was wondering if we could have a special day for rsd awareness too like Kev said to do. I know we have November a rsd awareness month, but if it were a specific day, maybe people could devote more time to doing things to raise awareness and funds to help find a cure for rsd. Like walkathons, booths at summer fair events and passing out flyers and wristbands ( like rsd hope has) to raise awareness, especially in drs offices. I don't know if these are good ideas. They are just thoughts. I hope it helps you write something. You are an awesome writer. :) If there is anything I can do to help, pls let me know. Thanks.