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.