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BIG Changes and Announcements coming soon!

Hey everyone~ Just an F.Y.I. keep your eye's open for some cool new changes coming to the front page of (The front page is where you are when you see our medical disclaimer, it you just type you land there...)

Also if everything goes as we hope, either the last week of Jan. or the first week of Feb. 2010 you will all get the details on our first ever benefit fund raiser (ours is not for the Hati earthquake survivors, although we do have a link on the website where you can learn ways to help and you can also get a lot of useful info by clicking that link!) Lastly, about the same time as our fund raiser announcement we should have some ads starting to be ran online for our website!

2010 should be a great year here at We hope you stay tuned and get involved!


Call us!

Yes you read that right, call us....we now have our google voice number activated and configured. You can call us directly now! Our number is pretty easy to remember also, it's (708) USA-RSD1 [that's (708) 872-7731]. As of press time, the g/v number is connected to one operator, Jason, from 12 (noon)-8 pm Pacific Time. As time progresses though, we will have operators manning the phone from 6 am - 6 pm Pacific Time (to save you the trouble of doing the math, that's: 7-7 MT, 8-8 CT and 9-9 ET) each operator taking somewhere around 2 hour shifts.
So what if you don't catch us when the phone is being manned? Or what if we miss the call? Don't worry we have voice mail and will return the call as soon as we get a chance (but this is important, you MUST leave you phone number as the caller id on our end will show the g/v number, not yours).
So click the link (found here), type your name and number then google will call you and connect you to us....or you can call us directly by dialing (708) USA-RSD1 !

Digital Archives and New pages are now Live!

Just as we promised, we now have our Digital Archives section up and running. Currently, at the time of this announcment (July 08, 2009) we only have the newsletter section populated. Next will be the meetings archive then the spotlight archives.
We also condensed the 'membership info', 'by-laws' and 'meetings' pages under one new link: Membership & Org. Info. We did this in order to conserve screen space for our ever growing side bar...isn't growth just awesome!

New Meetings Archive Page is live

We just brought a new page online (made it live). The page is for the purpose of aiding transparency in what we do. Just like most organizations, we have regular meetings of our directors and members. Those meetings are open door (meaning anyone is more then welcome to know what is said during them or even be there [and join in if they meet the qualifications. i.e. being a member]) and determine how we do what we do.
In an effort to aid the free flow of information, and to keep ourselves accountable, we are now putting transcripts of the meetings online for public viewing! In doing so we are holding ourselves accountable to YOU! We will do everything we can do comply with what's discussed in the meetings and now you'll be able to help us make sure we do our job.
Please take a moment to check out the new page, the transcription is not doctored (but we do organize it to make it easier to read) and will remain up until one (1) month prior to the next meeting. After that users may request the transcript (minutes) in digital form (for free of course).

New Media Guru

Special Announcement:
We have a new media guru!!!
Some background first... Pat, our v.p. of media relations and original media guru has had some family stuff come up that has caused her to cut back some responsibilities with She will remain our v.p. of media relations but in order to allow her more free time to handle family needs she has resigned as our media guru. We want to extend our gratitude to Pat for forging the way with our media stuff...and we want to also express our support for her decision.
Now some may be asking themselves what our media guru does. Well we'll tell ya'. Our media guru is the person responsible for trying to make sure we get media coverage. The guru 'approves' all our official media letters (we have a template for media outlets, for congressional rep.'s/senators and for state legislators). They are also the voice of our organization, the person who would do the interviews on behalf of all of us (or at least set the interviews up)
Now onto the introduction of our new guru....Some may know her already. We spotlighted her RSD blog in late 2008 and she sits on the tri-fold/pamphlet committee. Her name is Christine. She lives in southern California and she does have RSD (remember some of our admin.'s do not have RSD, that assures that the group can keep running even when those of us with RSD have flare ups etc.) so if/when she does any 'interviews' the interviewer will see what RSD can do.
Christine is excited to be on board in this new way, so we want to welcome her and thank her in advance....the email address will now be hers, so feel free to drop her a line and say hi and welcome her

New Article Published

We have just published our first article. It's entitled 'To Live With RSD' and was written by our co-founder & President, Jason; edited by the other co-founder & Treasurer's, Nikolai, girl friend Miriah. Please feel free to download it and distribute it, just read our creative commons license for our copyleft info (what permissions you have, pretty much you can share it freely, but can NOT sell it. Also please give us credit [, NOT Jason])
The article can be downloaded from our download section. It's available in both Open Document Format (for Open Office, Star Office etc.) and Rich Text Format (for microsoft word and works).

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Medical Disclaimer
None of the authors are trained medical professionals and no guarantee is made that the users of the forums are either.
While we do our best to verify the validity of the information on this website, we are not able to verify everything.
Please be aware of this and keep this in mind while using this site, and as always, you should consult a qualified medical professional before
making any medical decisions.

This work is licensed under a:
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You are FREE & Encouraged to: download, use and share all our original content [unless clearly stated othewise]